Re: some of everything

[Guest guest]

Hi,

[Meryl]

>They may be taking the illness seriously and continue to construct

>good studies... but they have a problem in that the patients they

>study are not very sick. One of the investigators told me they have a

>real hard time getting severe cases.... and while they do plan some

>good studies the results are often not publicised because they were

>negative results....ect..,,, they also seem to have a fancy for

>psychology .... which is okay to study but right now the focus should

>be on primary processes rather than any secondary psychological effects.

> " We and others have found no evidence of immunological abnormality in

>the blood. " (2000 Newsletter) This shows to me that they may not be

>studing exactly the patients that they should. If they are not even

>finding mild T-Cell activation markers, elevated RNase L or NK cell

>function abnormalities ect... then are they studing the patients that

>they should?

>

I have been a study patient there, and overall I tend to agree with Steve.

As far as not getting very sick patients - they do bracket PWCs into levels

of activity, and do not take mild CFS patients into studies. The most

severely sick (housebound) are practically inaccessible for outpatient

studies, and no way is the funding available now sufficient for inpatient

studies (UMDNJ can't even pay per diems; they recently got enough to pay

tolls and train fare for PWCs)

They do have a heavy concentration in the psych end; this is I think more a

historical accident than a deliberate philosophical choice.

They do not, and have not been, testing for NK cell function, CD3/4/8

ratios, and other sophisticated immunological tests. These were supposed to

be done by the study center in Boston, which was to concentrate on the

immunological end of the disease; they have since dropped the CFS center

completely. The only immunological test I had that ws over and above what a

normal hospital lab would give was the Ig subgroup testing (my IgG is

heavily concentrated in IgG1, and becoming more so with time.)

One thing that I do know is that they tried to find PWCs to do their

exercise study, and had a h*@% of a time finding any - tried me 3 or 4 times

over nearly a year. When they finally did get PWCs to participate (probably

selected to be milder CFS) they found that exercise made both physical and

mental function worse over the long run, (That one was published, even tho

it was obviously not the result expected by the study designer.)

Also, this is a regional center, and collaborates with researchers in

several places in N NJ and SE PA (Phila. area) - even into HYC I think.

*****

> > [Rich] I am not convinced that

> > depleted uranium could produce the types of symptoms observed, or

> > could produce symptoms on the time scale observed.

>[Meryl]DU could cause mitochondrial mutations! DU is a good candidate for

>those in

>whom it is present in meaningful amounts.

>

Meryl, I assume you are speaking of the radioactivity of the DU. DU and its

daughter products are mostly alpha emitters. Alpha particles are so large

(helium nucleus) and penetrate so little that they will be stopped by the

layer of dead cells on your skin. Internal DU & its daughters will tend to

kill cells rather than mutate them, because of the high amount of energy

they leave in such a limited space. (Gamma rays and beta particles are much

better mutagens.)

Also, mito DNA mutations from DU would be individual events - one

mitochondrial DNA molecule in one cell. This will not result in the kind of

general effects that are seen in CFS - including the reported cases of mito

DNA mutations, which are found in cells throughout the body.

*****

>[Rich] I also think that

>excess consumption of phosphates (as in cola beverages), together> with

>low intake of magnesium (because of bottled and desalinated water,> and

>lack of good dietary sources of magnesium in the Gulf War) is still a

>possibility for those with the genetic defect proposed by Dr. R.

>St. Amand in his work with fibromyalgia.

There is a condition known as phosphate diabetes, not widely known and

probably not known by GPs - my endocrinologist knew of & tested for it, but

that was the first time I had been tested, 5 years into my illness.

Phosphate diabetes can give all of the symptoms of CFS. Pretty sure I saw

the abstract on Medline - the article title was something like 'Phosphate

Diabetes as the case of diagnosed CFS.'

*****

>[steve] Does anyone know what part of NJ the center is located. The address

>on the

>Newsletter is East Orange NJ where is that?

The UMDNJ campus is basically in a suburb of Newark. It is accessible by

train to Penn Station, Newark, and a single bus ride, but be sure to tell

the bus driver you want to get off at UMDNJ or you will wind up riding to

the end of the line like I did.

The VA facility in E Orange is also Newark area, about 1/2h drive from

UMDNJ.

*****

[bwentdog]

>OXYTOCIN is a FDA approved Prescription drug and as such has a NDC -

>National Drug Code

>To COMPOUND the trouchees the pharmacy bulks orders the drug in a

>Powderformat

>Apparently the FDA does not issue a NDC code for this bulk powder, even

>though it is theEXACT same drug.My company had Prescription Drug plan.

>This Does cover compounded drugs.

>BUT they will NOT cover THIS compounded drug since the drug comes as a Bulk

>Powder tothe Pharmacist and as such it has No NDC.

>I am feeling like I am getting RIPPED OFF and quite desperate.

>Anyone have any experience or ideas !?!

Welcome to the world of insurance fraud (mostly perpetrated by the insurance

companies, all the TV ads to the contrary notwithstanding.) The pharmacist

should be able to submit for reimbursement as just 'Rx Compounded

Medication.'

If the customer service of your ins. co. doesn't give it to you, step one is

to complain to the state Dept. of Ins. But don't get your hopes up - most of

them are owned & operated by the insurance industry.

The next level of escalation is to find an attorney KNOWLEDABLE IN INSURANCE

LAW - a general attorney will write one letter that lets the ins co know

that they don't know what's going on, and then probably give up. (voice of

experience)

*****

[ L.]

>My facial pain doctor (TMJ - jaw joint problems) told me that

>Doxycycline doesn't kill bacteria as much it weakens them (he wasn't

>refering to mycoplasma - hadn't heard of it). So, hopefully this

>type of abx isn't such an ssault on the system, then.

Unfortunately, most antibiotics act only by stopping the growth of the

infection, and waiting for the immune system to clear it out. This is even

the case in those abx that are actually bactericidal in vitro.

I have had to get extra-long courses of abx the last 3 or 4 sinus infections

I have had - typically 14 days instead of 10, sometimes 20 days.

Jerry

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