Response to

April 21, 2004

>

> My dr. really recommends that I continue with the anti-virals minus

> the Sustiva...and get back on the Bactrim in coordination with the

> rituxan/chemo treatments - also in 2 weeks he wants to try me a

> Protease Inhibitor or 2 in place of the Sustiva. He feels that if I

> do not take the anti-virals in concjunction with the chemo.....the

> lymphoma will likely come back and become possibly chemo-resistant.

> Without my immune system strong and abundance of t-cells (over 200)

> ......the lymphoma could take over the body and cause death - hence

> the imperative to continue with the meds during the cancer

> treatment.

I'm not suprised at all that's what your MD recommends, . Now,

I'm not saying your Dr. is evil, but I am saying I believe he is

wrong. No conspiracy required. The challenge I put before you, which

you seem to shrug off, is getting a second opinion re: YOUR DIAGNOSIS

and YOUR TREATMENT. I have provided you a reference at least three

times for an ND [Naturopathic Doctor] low cost community clinic in

Portland associated with one of the four, four-year ND schools in the

country, which only charges $35 for a visit. Not to beat a dead horse

here, but if you repeat the same action and expect a different

result, that's the definition of stupidity. Now, no one is perfect,

but we need to learn from our mistakes and we need to have all of the

information, especially if you have two major schools of thought or

approaches to health: ALTERNATIVE and CONVENTIONAL. If you are only

going to MDs, you are likely going to get the conventional,

pharmaceutically-based 'standard of care.' They will always believe,

and likely sincerely, that they are right EVEN WHEN THEY MAY BE

WRONG. But if you are going to only one source primarily for

assurance of your health care decision-making, then you are not going

to be able to make a full and fair determination of what is best. And

moderation, or attempting to integrate or complement your approaches

is not always best, although many people erroniously believe

that 'splitting the differance' is the wisest. Sometimes, and I

believe this is one of those cases, you cannot be a house er host

divided; using immune-supressive drug therapies along with immune-

enhancing, natural approaches.

> My dr. has/had 3 others in his care that had lymphoma - 2 are

> thriving after the chemo and apparently robust health.....and 1

> young man ....only 25....did not survive the lymphoma - he also was

> not consistent with taking the anti-virals which may or may have

> not contributed to the cancers ultimate victory. (dr. is sure that

> his quitting of the meds brought his demise so soon).

Oh, so your doctor gave you anacdotal experience of three patients?

Well, then that seems to be pretty solid evidence right there! NOT!

, I have tried to emphasize the importance of completed [not

stopped early] and placebo-controlled [drug vs no drug comparisons]

studies. Did you ask your Dr. for this REAL evidence? Did you ask for

the reference to the study or studies which data supports such

conclusions? You have to really get serious about seperating BELIEF,

STATEMENT OR CONJECTURE FROM EVIDENCE. There's a reason why studies

have more than three persons in them and are controlled for all sorts

of factors that might have influenced these three uncontrolled

clinical episodes, who knows? Your Dr's belief should be supported by

the research data.

> So........they (all dr.s just about) want me back on the hiv meds &

> Batrim (a mild tolerable regimen) to help me in my cancer recovery

> process.

All the MD doctors want you to take this course, right? I wonder what

the ND doctors would recommend? Oh, but you wouldn't know that, would

you? Hmmmm... maybe before you go to another MD, you might consult

with an ND to get A TRULY INDEPENDANT, SECOND AND ALTERNATIVE VIEW?

> After the cancer is in total remission......then I need to keep

> my immune system strong and maintain preventitive measures so the

> cancer never comes back again.

You need to keep your 'immune system' or overall health strong

before, during and after the fight against cancer or any other

illness.

> As far as the anti-virals/PI's go....and treating the 'hiv'

> ....thats another chapter.

IOW, you'll put off the day of decision and likely continue to go to

MDs exclusively or primarily and wait until they wear you down with

kindness and good intentions. Will you ever demand these Drs. produce

the reference to the data from studies that placebo-controlled and

completed AND whether the 'AIDS' drug trials used methodological

endpoints of LIFE-EXTENSION and REDUCTION OF SYMPTOMOLOGY rather than

the questionable or socalled surrogate markers of CD-4 T-Cells or

PCR " Viral Load " ? If you don't insist upon the REAL EVIDENCE for

safety and efficacy, it appears you'll be rewriting the same chapter

of testimonialism and good intentions.

> Some here criticize and blast the pharma companies and doctors like

> its all a conspiracy, etc.

Well, do we care what " some here " do in terms of discerning the fact

from fiction? Where did I, in any of our conversations, ever claim a

conscious conspiracy was required in order for popular concensus to

have lead to false conclusions? I believe I am quite careful in my

choice of words in most instances.

> - some of the 'dissident' sites challenge mainstream concepts, etc.

> about hiv......but how many actually are teaching people to

> actually guard, strenghten and maintain a strong healthy immune

> system in a practical manner????? Where are the raw materials and

> data to help people amid the traditional hiv culture?

Some are, some are not. Some AIDS Dissident Scientific, Alternative

Health sites are doing it better than others. But what's your point?

If they don't reprove or replace the failed theory or model with a

new one, then they can't be right in their critique or challenge of

the old one? This is the most basic fallacy of logic...

Argument from Ignorance (argumentum ad ignorantiam)

Definition:

Arguments of this form assume that since something has not been

proven false, it is therefore true. Conversely, such an argument may

assume that since something has not been proven true, it is therefore

false. (This is a special case of a false dilemma, since it assumes

that all propositions must either be known to be true or known to be

false.)

Example:

Since you cannot prove that HIV does not cause AIDS, HIV causes

AIDS. [OR] Since you cannot prove what does cause AIDS, HIV causes

AIDS.

> Kinda reminds of me ACT UP finally taking the dissident views to

> sauce up their latest political exploits, etc.

Didn't understand your point here. Whatever someone else does or does

not do has no bearing on whether the 'HIV' antibody tests or CD4 T-

Cell Counts or PCR " Viral Load " test are meaningful medical markers.

> Perhaps someone needs to write a book - 'Making sense of hiv'.

Well, maybe you'll write that book someday. Fact is, quite a number

of AIDS dissenting scientific books HAVE ALREADY BEEN WRITTEN. The

problem is, some of them are not read or people are swayed by

anacdotalism or popular concensus. Perhaps many more people need to

read the books and articles and websites more thoroughly, including

you, ? You've admitted this to me in private conversations.

> There is obviously alot that the dissidents dont or may not know

> about how the immune system works along with the mainstream medical

> establishment.

Again, see the logical fallacy above. No one said AIDS Dissidents had

a One, True Hypothesis to provide all possible alternative

explanations for why someone might test socalled 'HIV' antibody

positive or what all of the co-causes why someone might develop the

myriad of maladies under the 'AIDS' catagory or classification. There

is no evidence that most of them would even be related if it were'nt

for the 'near appearance of correlation' from the circularly

constructed defintion of 'AIDS' which specifically requires 'HIV

infection' assumed or demonstrated.

> Sounds like we need some real tangible clinical studies, experience

> and proven methods to assist us in the enterprise of sustaining a

> competent immune system and over-all good health.....instead of

> jaded dissidents and closed minded mainstreamers juggling their

> wares before the curious public....like potpourri propaganda.

Again, I think most AIDS Dissidents, who by the way, are not selling

any product or service, unlike the AIDS Apologists, have attempted

time and time again with varying success to support A FREE SCIENTIFIC

INQUIRY, FULLY INFORMED CONSENT and PROPORTIONATE ACCESS TO

ALTERNATIVE, NON-TOXIC IMMUNE-ENHANCING THERAPIES. I don't know any

AIDS Industry organization that even advocates 1% of the AIDS budget

be directed in these areas. Do you, ? In fact, most of the AIDS

Apologists oppose those most reasonable accomodations. You see, ,

AIDS Dissidents are not in a position of power to enforce or enable

scientific censorship or medical 'correctness' at major international

conferences, for one example. But Dissidents keep going and going. We

organized an AIDS Alternatives conference accross the blvd in

Barcelona co-sponsered by The Group and Ecologia Magazine and the

Spanish Assoc. of Complementary and Alternative Medicine. It was

covered in the Spanish press and we had people passing out literature

to the Intl Conference attendees. Yet, after all we can do, there is

no cure for incredulousness. If people can't or won't even imagine

there's no hiv and allow for the possibility they and the dominant

scientific and conventional medical model could have gotten it wrong,

then they will not be saved in their ignorance and arrogance.

You may have faith in an conventional MD's diagnosis and treatment

which is unfounded or blind, but you cannot always expect it will

evidence the good work. Much wiser, it would seem, to have tried and

tested your faith in the refining fires of reason and logic, informed

by your experience in doing first that 'work'[perspiration] necessary

for inspiration [faith, hope] to remain alive.

Healthfully and Hopefully,

Jon Landis

April 5, 2006

On Wed, 05 Apr 2006 10:10:41 -0500, Bucher wrote...

,

Our daughter also has longer periods of wellness during the summer

months. It is hard to get your head around an illness like this that

has no definite test. We still aren't sure but it was the only

diagnosis we were given after three years of illness. how old is your

daughter? is almost six and she has been sick since she was 3

years.

take care

Kris (mom of )

April 6, 2006

Hi Kris,

has been having this since she was about 8 months old. I guess I

cant really even remember because when it first started I just thought she

was just getting sick alot. She started this all with a fever and mouth

sores. Just recently she also is getting sore throats. I just cannot

believe that this can all be this simple. It really just scares me. I am

hoping that with the prednisone on the next bout we can kick this. Our

doctor seems to think it will end then. But from what I have been reading

it does not just end, it could get worse. What I really cannot believe is

that there are so many children out there with this syndrome. is now

3 1/2 so we have also been going through this for about 3 years. We always

look forward to summer.

Thanks for the email.

God Bless

>From: " Krisandra Warren " <kwarren@...>

>Reply-

>

>Subject: Re: response to

>Date: Wed, 5 Apr 2006 20:39:20 +0000 (UTC)

>

>On Wed, 05 Apr 2006 10:10:41 -0500, Bucher wrote...

>

>,

>Our daughter also has longer periods of wellness during the summer

>months. It is hard to get your head around an illness like this that

>has no definite test. We still aren't sure but it was the only

>diagnosis we were given after three years of illness. how old is your

>daughter? is almost six and she has been sick since she was 3

>years.

>

>take care

>Kris (mom of )

_________________________________________________________________

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April 6, 2006

On Thu, 06 Apr 2006 08:05:00 -0500, Bucher wrote...

Hi again,

Just wondering if you know about Cimetidine (Tagamet) as a treatment.

It is far safer than the steroid-we have given Prednisone twice and it

stopped fever but not other symptoms. Cimetidine has kept the fever

away for over 12 weeks now and we feel so relieved. julia didn't get

sores in her mouth until her third year of sickness.

take care

Kris (mom of 5)

> Hi Kris,

> has been having this since she was about 8 months old. I guess

> I cant really even remember because when it first started I just

> thought she was just getting sick alot. She started this all with a

> fever and mouth sores. Just recently she also is getting sore throats.

> I just cannot believe that this can all be this simple. It really

> just scares me. I am hoping that with the prednisone on the next bout

> we can kick this. Our doctor seems to think it will end then. But

> from what I have been reading it does not just end, it could get

> worse. What I really cannot believe is that there are so many

> children out there with this syndrome. is now 3 1/2 so we have

> also been going through this for about 3 years. We always look

> forward to summer. Thanks for the email.

> God Bless

>

>> From: " Krisandra Warren " <kwarren@...>

>> Reply-

>>

>> Subject: Re: response to

>> Date: Wed, 5 Apr 2006 20:39:20 +0000 (UTC)

>>

>> On Wed, 05 Apr 2006 10:10:41 -0500, Bucher wrote...

>>

>> ,

>> Our daughter also has longer periods of wellness during the summer

>> months. It is hard to get your head around an illness like this that

>> has no definite test. We still aren't sure but it was the only

>> diagnosis we were given after three years of illness. how old is

>> your daughter? is almost six and she has been sick since she

>> was 3 years.

>>

>> take care

>> Kris (mom of )

>

> _________________________________________________________________

> FREE pop-up blocking with the new MSN Toolbar – get it now!

> http://toolbar.msn.click-url.com/go/onm00200415ave/direct/01/

>

April 6, 2006

& Krisandra,

My son Blake was hospitalized at 2 for high fevers, was in the hospital for 4

days after numerous doctors visits we were finally sent to ID at Children's in

Colorado. Dr. Glode (Glo-Day) diagnosed Blake as and gave us prescription

for Cimetidine(Tagamet) and Prednisone but we did not feel comfortable with

giving Predinose due to the long term dosing and possible side effects. We

decided to give Cometidine and Blake has not had a episode since, Blake

has been on Cimetidine since September 20, 2005.

Blake has never had mouth/foot sores, aching limbs, stomach ache. I guess we

have been fortunate that Blake has only had the high fevers, this went on for 9

months or so. Blake's doctor would always run throat cultures only to have them

all come back negative. I know there was something more to Blake's sickness, the

doctor always told me that children have 6 to 8 viruses a year and that this was

all normal. In my heart of hearts I knew this was not normal and I am glad I

followed my instincts and thank god I found this group that only confirmed my

thoughts that Blake had something more than just a fever.

Hang in there it does get better!

Felicia

Blake 3

Krisandra Warren <kwarren@...> wrote: