Re:ATP/Glu/ ChatSalvato1,98

[Guest guest]

Dr Salvato of Houston, TX participated in a chat

on Prodigy Classic recently to answer various questions regarding CFIDS. .

Dr. Salvato is an extremely dedicated specialist in CFIDS & HIV. Her CFIDS

practice was one of the Ampligen trial sites in 1990-91.

Here are the questions:

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

Q - What do you think of the research being done on neurally mediated

hypotension? Do you treat any of your patients according to the Hopkins

protocol?

Dr S. -----Neurally mediated hypotension: Out of my practice, I see 17% of my

CFS patients who meet the definition of neurally mediated hypotension.

However,

only 6% - 7% have responded significantly to therapy for this, including

increasing salt intake and Florinef treatment. I think this disease is related

neurally to the neurologic symptoms as well as the immune system dysfunctions

we see with CFS, and further research would be helpful in this area. A

treatment for this would not be a cure, but could help substantially with the

symptomatology.

Q - Do you think Ampligen will ultimately be approved? Will there be an oral

form? Ampligen:

Dr. S. -----I think Ampligen will ultimately be approved. It has been studied

in CFS and HIV disease. Currently, there are approximately 20 patients

nationwide who are on a cost recovery program in which they pay for the

Ampligen. Their response to this drug should be very important as well as the

double-blind study that is slated to start in June of this year. There may be

an oral form of Ampligen available, but I think it will be several years after

the IV form is approved.

Q - In your experience, do CFS patients who have been ill for longer than five

years have a reasonable hope of recovering? Do you see CFS as a chronic,

lifelong illness, or do you think patients can recover completely?

Dr. S. -----Recovery: The CDC criteria show that only 12% of patients fully

recover after they have had this disease for more than 5 years. In my twelve

years, this number is approximately 32 - 34%, but there are still a

significant

number that do not improve the longer they have the disease. In some

people,it may be a chronic life-long illness, but some patients improve

spontaneously and many patients to various treatment modalities. The

cumulative research to date does not suggest that this is a progressive

disease, however, I have seen a small percent of my patients progress over

time

in their symptoms and never recover.

Q. - Do you think CFS is a single, distinct illness, or a group of illnesses

that share symptoms? Do you believe that CFS is primarily a neurologic

illness, or based in the immune system?

Dr. S -----Cause: I do not think CFS is a single distinct illness. I believe

it is the end-result of a group of insults to the body, most notably the

immune

system. This may include various toxins, viral illnesses, severe stress to the

system. It could also be a form of a collagen vascular disease that does not

yet fit any of the classic collagen vascular diseases, such as lupus and

rheumatoid disease. I do not believe that it is primarily a neurologic

illness,

although neurologic symptoms are very prominent. I really feel it is an immune

based dysfunction and from this stems all the symptoms including the

neurologic

dysfunction.

Q - What do you think of the effort to change the name? If it was to change,

what name do you think would be appropriate? Do you think CFS is taken more

seriously by government agencies these days?

DR S. ----Change in name: I think it is very appropriate to continue efforts

to try to change the name of Chronic Fatigue Syndrome. I would be accepting

of

the name CFIDS (Chronic Fatigue Dysfunction Syndrome) as it more defines the

underlying findings in this disease. I think this disease is more seriously

taken by the governmental agencies in this day and time.

Q - What treatment to you recommend for the sleep disturbances that are part

of

CFS?

DR S. ----Sleep disturbance: Usually for the sleep disturbance, I initially

recommend relaxation techniques and possibly Tylenol PM. If the sleep

disturbance is associated with restless leg syndrome, or various neurologic

symptoms, sometimes I use Klonopin on a nightly basis to help with sleep. In

rare cases, I recommend short-term sleeping pills such as Ambien 10mg at

night just to re-set the sleep cycle, but these drugs on a long-term basis are

not usually recommended.

Q - What do you think causes CFS?

Dr. S. -----Cause of CFS: It is my belief that CFS is a viral illness,

although we do not know which virus it is at this time. I believe this because

the majority of my patients have immune abnormalities detected in this disease

and they have many symptoms of viral illnesses including sore throat, lymph

nodes, and fatigue. In addition, I see a large number of AIDS patients and my

CFS patients get some of the same symptoms of AIDS patients, although they do

not die from the disease, in general. These symptoms and signs include yeast

in the mouth, various skin conditions such as rashes and shingles.

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

I have several questions regarding the immune system.