infections

June 3, 2006

That's cool. A plan of action with some kind of measurable goal is

what I'm all about.

penny

" This used to be routine, until money became more

> > > > important than

> > > > > patients. Now the only patients that get this care

> > > > > routinely are

> > > > > pets and farm animals. "

> > > >

> > > > I have often wished that I could be my daughter's dog. Many

> > > > of us are doing the best we can. In many cases you are

> > > > preaching to the choir.

> > > >

> > > > I cannot get any testing where I live. I no longer bring my

> > > > doctors research painstakingly put together. They ignore it

> > > > or get angry. After 16 years of this kind of treatment,

> > > > what would you recommend I do? I'm listening, both ears

> > > > wide open.

> > > >

> > > > I keep trying supplements but usually I'm unable to tolerate

> > > > them. You caught me on a rough morning and your post put me

> > > > over the top.

> > > >

> > > > Kathy J. F.

> > > >

> > > > ----- Original Message -----

> > > > From: " penny " <pennyhoule@>

> > > >

> > > > >I find it disturbing that almost everyone still believes

> > > > >that

> > > > > infections are " secondary " to our illness.

> > > > >

> > > > > It's like saying the disease TB is secondary to people's

> > > > > weak immune

> > > > > systems.

> > > > >

> > > > > I'm accused of being vocal. But that's because it's hard

> > > > > to get

> > > > > people to listen. (and I wish those who do listen would

> > > > > post here,

> > > > > rather than writing me privately).

> > > > >

> > > > > I'm also very disturbed by people claiming that " there are

> > > > > too many

> > > > > infections to test for " . This is not only lazy,

> > > > > misleading,

> > > > > irritating and wrong, it's also, I believe, a great

> > > > > disservice to

> > > > > patients and can lead to great harm. The fact is, we don't

> > > > > routinely

> > > > > get tested for ANY infections. Especially the simple yet

> > > > > obvious

> > > > > (and cheap) ones like Staph, strep and pseudomonas.

> > > > >

> > > > > I know several microbiologists who can tell you exactly

> > > > > how easy it

> > > > > is to test and identify organisms. First you put the

> > > > > sample in the

> > > > > petri dish and watch to see what grows profusely. You'll

> > > > > be able to

> > > > > identify the culprit from that. No special techniques

> > > > > needed. Then

> > > > > you put some antimicrobial discs in the dish, and see

> > > > > which ones

> > > > > push the growth back. Then you treat with said

> > > > > antimicrobials, then

> > > > > you retest, adjust the drug and retreat until ALL

> > > > > organisms and

> > > > > symptoms are gone. Then, if symptoms are not completely

> > > > > gone, you

> > > > > can dig for stealthier organisms, but I bet you'll be

> > > > > surprised at

> > > > > how infrequently that will be necessary.

> > > > >

> > > > > This used to be routine, until money became more important

> > > > > than

> > > > > patients. Now the only patients that get this care

> > > > > routinely are

> > > > > pets and farm animals.

> > > > >

> > > > > penny

> > > > >

> > > >

> > >

> >

> > 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.

> >

June 3, 2006

100% agreed!

I don't have a problem with CFS. It's what doctors do with it that I

have a problem with. Docs like Cheney, who believe it's a true

condition are extremely rare. The majority of docs write it (and us)

off for all kinds of lame reasons.

penny

> What IS CFS? It's nothing more than a title for a conglomeration

of

> symptoms (all of which can also be categorized under basic

> infections). Lets be real. CFS is NOT widely recognized as

a " real "

> disease in and of itself with an identified cause and course of

> treatment. So to say that we've got infections PLUS CFS??? What is

> CFS again?<

>

> CFS is an emerging phenomenon consisting of a pattern of

> characteristic and concurrent signs and symptoms that

distinguishes

> itself by occuring in a manner that should afflict no normal

healthy

> person.

> Physicians who follow Dr Cheney and Dr s lead by

> recognizing that these concurrent symptoms have a distinctive

> pattern which calls for further testing go on to identify

> immunological abnormalities as a result of being aware that these

> complaint represent an abnormal condition that has been very

> publically described.

> Doctors who display skepticism in the face of obvious

abnormalities

> tend to focus on the description and characteristics contained in

> the definition as BEING the illness, instead of an indication that

a

> syndrome of unknown etiology is present - implying the need to

> determine the cause.

> This not substantially different to the way some physicians view

> PMS as a serious hormonal imbalance which directly causes

emotional

> disturbance, while other doctors speak the same words, but view

PMS

> as a hormonal excuse for feminine exaggerations and hypochondria.

> There is nothing in " CFS " that is inherently deficient in its

> intended function to call attention to a syndromic entity.

> The response to the CFS description is determined by the

functional

> intent of the individual doctors.

> Denialist doctors began this game by blaming the patient.

> It is quite convenient for those of denialist mentality to shift

> the blame for their refusal to listen to the patients illness

> presentation upon the name " CFS " , and denigrate the distinct

> syndromic description as an incomprehensible and meaningless

> conglomeration of complaints which represent nothing.

> As bad as the name " CFS " is, it is still not so deficient that

they

> should be allowed to get away with this.

> -

>

June 3, 2006

Rich, All,

This has been my experience over the 23 years of CFS. There have

been numerous times that I tested negative for parasites, had no

known infections overwhelming my body (could have been some held in

check by my immune system). I had five years in which I could

dance, teach yoga, be active, work, go to the beach for vacations,

etc. I had to control my environment and food intake but, that is

all.

At no time, though have I been free of CFS.

My diagnosis of CFS came after a severe car accident - not an

infection.

-- In , " rvankonynen "

<richvank@...> wrote:

>

> Hi, Penny.

>

> I'm sorry that the discussion of glutathione depletion is tedious

to

> you.

>

> For what it's worth, I certainly agree that people with CFS have

> infections. Probably most also have glutathione depletion.

> Which leads to which, or are they unrelated? It's not easy to

> establish the cause and effect sequence in the pathogenesis of

CFS.

> Furthermore, there seems to be considerable heterogeneity in the

> population that meets the criteria for CFS, so the cause and

effect

> sequence may not be the same for all.

>

> I don't disagree that in at least some cases it is important to

> directly target the infectious agents with well-chosen

> antimicrobials. I'm not convinced that this is true in all CFS

> cases.

>

> I also think that different people have widely different immune

> systems, probably largely because of their different genetic mak-

> ups. A pathogen that is not able to get a foothold in one

person's

> body may produce a vigorous infection in another person's body.

>

> While the glutathione story may seem like the same ol' same ol', I

> think there is a radical difference in it now compared to say, a

> year ago. The difference is that we are now homing in on the

> vicious circles that have held glutathione down in so many PWCs,

> thanks to the progress in autism, which appears to have

significant

> similarities to CFS. I think that there is in fact a revolution

> going on in our understanding of the root causes of CFS.

>

> I certainly do not deny the importance of identifying and

combating

> infectious pathogens. However, unless the immune system is

prepared

> to take over the battle, I think that this will be a never ending

> process, as the person becomes reinfected in the absence of

> effective immune defense. It is a fact that the immune system

will

> not be able to perform properly if glutathione is depleted, or if

> the methylation/folate metabolism is blocked, as appears to be the

> case in many PWCs.

>

> So I see the two efforts as being complementary. One is offense,

> the other is defense. I think we need both to win the war against

> the pathogens. It is my hope that we will all more and more see

> these two aspects as both being significant parts of the solution

to

> the overall problem.

>

> Best regards,

>

> Rich

>

> >

> > orry it's bothering you. Now you know how I feel when reading

the

> > same posts for years on immune deficiencies, nutritional

> > supplementation like whey protein, and the latest, pages and

pages

> > and pages on glutathione.

> >

> > And respectfully, my whole point is people don't KNOW what they

> > think they know when it comes to infections. Otherwise you'd all

> be

> > freaking out.

> >

> > penny

>

June 3, 2006

Did Cheney or Lapp put you on antibiotics for this diagnosis? Which

antibiotics and what dose? (I am thinking that you probably have

multiple infections that the antibiotics have not begun to affect -

maybe wrong combos, etc.)

I read the NCF announcement. I have two questions.

Since they discuss DeMeirleir's research why don't they footnote it?

(Their writing involves ongoing insults to him.)

Since DeMeirleir's research on stat 1 is the basis for their

investigation of a virus degrading RNaseL and stat 1 why are they not

spending money to investigate the bacterial infections which do this?

To my knowledge DeMeirleir has not thought that a virus was at the

bottom of cfs. He thinks bacteria such as mycoplasma are the issue.

a Carnes

>

> I don't usually post here but have been reading all the infection

> posts. I have had CFIDS for 19 years or more and was diagnosed at

the

> Cheney Clinic by Dr. Lapp. Over 30years ago I started with FM.

> 18months ago I was diagnosed with Mycobacterium Avium Complex (MAC)

> and also another mycobacterium called Mycobacterium Fortuitum. I

have

> been on multiple antibiotics for over a year. I have experienced no

> change in my CFIDS/FM symptoms.

>

> Why is it that there has been very little discussion about the

> announcement coming out of NCF? Postive and even negative views

should

> be out there on these boards online and it has been strangely

quiet.

> Is everyone doubting that this announcement will hold up like so

many

> disappointments in the past? I just find it very strange that the

> cfids community is so quiet about this announcement.

>

June 3, 2006

Dr. Lapp diagnosed my cfids 19 years ago not the mycobacteriums. The

mycobacteriums that are in my lungs, didn't come about until the

last year or so and were diagnosed by pulmonologist by bronchoscope

and then cultures that grew out. I am on zitromax, cipro and

ethambutol daily. These are treated like tuberculous but the

treatment is longer and these mycobacterium aren't contagious like

TB. I had drug sensitivity testing done to find out what antibiotics

these mycobacterium were sensitive to so thats why I take the 3 that

I am on. The others I was resistent too. These antibiotics aren't

being used for my CFIDS but for the mycobacterium avium complex and

the myco. fortuitum. Sorry for the confusion of who dx. what.

>

> Did Cheney or Lapp put you on antibiotics for this diagnosis?

Which

> antibiotics and what dose? (I am thinking that you probably have

> multiple infections that the antibiotics have not begun to affect -

> maybe wrong combos, etc.)

>

> I read the NCF announcement. I have two questions.

>

> Since they discuss DeMeirleir's research why don't they footnote

it?

> (Their writing involves ongoing insults to him.)

>

> Since DeMeirleir's research on stat 1 is the basis for their

> investigation of a virus degrading RNaseL and stat 1 why are they

not

> spending money to investigate the bacterial infections which do

this?

> To my knowledge DeMeirleir has not thought that a virus was at the

> bottom of cfs. He thinks bacteria such as mycoplasma are the issue.

>

> a Carnes

>

> >

> > I don't usually post here but have been reading all the

infection

> > posts. I have had CFIDS for 19 years or more and was diagnosed

at

> the

> > Cheney Clinic by Dr. Lapp. Over 30years ago I started with FM.

> > 18months ago I was diagnosed with Mycobacterium Avium Complex

(MAC)

> > and also another mycobacterium called Mycobacterium Fortuitum. I

> have

> > been on multiple antibiotics for over a year. I have experienced

no

> > change in my CFIDS/FM symptoms.

> >

> > Why is it that there has been very little discussion about the

> > announcement coming out of NCF? Postive and even negative views

> should

> > be out there on these boards online and it has been strangely

> quiet.

> > Is everyone doubting that this announcement will hold up like so

> many

> > disappointments in the past? I just find it very strange that

the

> > cfids community is so quiet about this announcement.

> >

>

June 3, 2006

Hello-

And what is the most recent NCF finding? Did you mean NIH? I

haven't been following the list for a week or so, so I may have

missed it. Thanks,

Mike C.

>

> I don't usually post here but have been reading all the infection

> posts. I have had CFIDS for 19 years or more and was diagnosed at

the

> Why is it that there has been very little discussion about the

> announcement coming out of NCF? Postive and even negative views

should

> be out there on these boards online and it has been strangely quiet.

> Is everyone doubting that this announcement will hold up like so

many

> disappointments in the past? I just find it very strange that the

> cfids community is so quiet about this announcement.

>

June 3, 2006

" I have

been on multiple antibiotics for over a year. I have experienced no

change in my CFIDS/FM symptoms. "

****I hope these are helping you.

For me anti biotics made my CFS worse by wiping out alot

of my good bacteria.

Regards

CS

June 3, 2006

You were not confusing. I just wondered because Cheney used to try

antibiotics on some patients, so I wondered if he was still treating

you. I will be curious to know if your cfs symptoms improve while on

these antibiotics.

Please watch out for tendon aching and pain. The Cipro can be very

dangerous. Also, you may want to get some magnesium taurinate and

take high doses of it (well apart from taking your Zithromax) in

order to protect your tendons from damage from Cipro. It can also

cause CNS damage which will look like depression and severe anxiety.

Hopefully you will respond well and get better. Just do watch out for

Cipro dangers.

a

>

> Dr. Lapp diagnosed my cfids 19 years ago not the mycobacteriums.

The

> mycobacteriums that are in my lungs, didn't come about until the

> last year or so and were diagnosed by pulmonologist by bronchoscope

> and then cultures that grew out. I am on zitromax, cipro and

> ethambutol daily. These are treated like tuberculous but the

> treatment is longer and these mycobacterium aren't contagious like

> TB. I had drug sensitivity testing done to find out what

antibiotics

> these mycobacterium were sensitive to so thats why I take the 3

that

> I am on. The others I was resistent too. These antibiotics aren't

> being used for my CFIDS but for the mycobacterium avium complex and

> the myco. fortuitum. Sorry for the confusion of who dx. what.

>

> >

> > Did Cheney or Lapp put you on antibiotics for this diagnosis?

> Which

> > antibiotics and what dose? (I am thinking that you probably have

> > multiple infections that the antibiotics have not begun to

affect -

>

> > maybe wrong combos, etc.)

> >

> > I read the NCF announcement. I have two questions.

> >

> > Since they discuss DeMeirleir's research why don't they footnote

> it?

> > (Their writing involves ongoing insults to him.)

> >

> > Since DeMeirleir's research on stat 1 is the basis for their

> > investigation of a virus degrading RNaseL and stat 1 why are they

> not

> > spending money to investigate the bacterial infections which do

> this?

> > To my knowledge DeMeirleir has not thought that a virus was at

the

> > bottom of cfs. He thinks bacteria such as mycoplasma are the

issue.

> >

> > a Carnes

> >

> > >

> > > I don't usually post here but have been reading all the

> infection

> > > posts. I have had CFIDS for 19 years or more and was diagnosed

> at

> > the

> > > Cheney Clinic by Dr. Lapp. Over 30years ago I started with FM.

> > > 18months ago I was diagnosed with Mycobacterium Avium Complex

> (MAC)

> > > and also another mycobacterium called Mycobacterium Fortuitum.

I

> > have

> > > been on multiple antibiotics for over a year. I have

experienced

> no

> > > change in my CFIDS/FM symptoms.

> > >

> > > Why is it that there has been very little discussion about the

> > > announcement coming out of NCF? Postive and even negative views

> > should

> > > be out there on these boards online and it has been strangely

> > quiet.

> > > Is everyone doubting that this announcement will hold up like

so

> > many

> > > disappointments in the past? I just find it very strange that

> the

> > > cfids community is so quiet about this announcement.

> > >

> >

>

June 3, 2006

NCF = National CFIDS Foundation run by Gail Kansky. They fund

research. They don't actually do research as they are not scientists

or doctors.

a

>

> Hello-

>

> And what is the most recent NCF finding? Did you mean NIH? I

> haven't been following the list for a week or so, so I may have

> missed it. Thanks,

>

> Mike C.

>

> >

> > I don't usually post here but have been reading all the infection

> > posts. I have had CFIDS for 19 years or more and was diagnosed at

> the

> > Why is it that there has been very little discussion about the

> > announcement coming out of NCF? Postive and even negative views

> should

> > be out there on these boards online and it has been strangely

quiet.

> > Is everyone doubting that this announcement will hold up like so

> many

> > disappointments in the past? I just find it very strange that the

> > cfids community is so quiet about this announcement.

> >

>

June 3, 2006

I think that sums it up very well. Prospective studies have shown for instance

that a certain subset of people who get infectious mononucleosis, Ross River

virus and the iella burnetii bacteria will come down with CFS. Surely if they

did more prospective studies of more viruses and bacteria's and viruses they

would find more infectious triggers. The latest EBV study suggests that CFS

patients can clear the virus but they still get ill - probably because of some

derangement in the brain caused by the initial hit.

Alot ot the infectious stuff we see could be secondary; ie come after the

inital hit that disturbed, among other things the immune system. HHV-6, EBV,

Mycoplasma's, perhaps even Lyme (???) could be opportunistic pathogens that are

able to get in there or become reactivated only because of the problems caused

by that initiial invader, trauma, toxin etc. Its interesting that most of the

pathogens that have been of interest in CFS are common, opportunistic pathogen

that most people have been exposed to and carry in their bodies anyway - they're

just not active.

Thus treating the pathogen will be helpful, sometimes very much so, but would

not necessarily cure CFS.

" H. Wish " <orchidwish@...> wrote:

The fact that an infection was a trigger does not mean that the

infection remains a factor. Some refer to these infections as

possibly being 'hit and run' infections, meaning that they 'trigger'

the metabolic and immune problems which are thereafter able to

sustain themselves (as in Rich's theories about the metabolic vicious

circle of being unable to maintain glutathione at healthy levels)

after the causative pathogen is no longer there or, even if there,

treatment of the pathogen would not break the vicious circle.

>Actually, there's a well-supported suspicion among researchers,

>doctors, and a lot of us here, that CFS is indeed triggered by one or

>more out of a wide range of possible infectious agents. In our case

>-- perhaps because of genetic predispostion, or environmental

>factors, or disrupted methylation, or (name your pet theory -- there

>are a lot of likely candidates) -- our bodies decide to respond to

>these infections by spiraling into the cascade of symptoms we now

>know as CFS.

>

>In other words: there are many different infections that offer entry

>points to the illness -- but, in the end, all of them create a

>disease process that ultimately leads to the same syndrome. (That's

>why they still haven't found a single causative agent after 25 years.

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.

June 4, 2006

>

> IMO the autoimmune DISORDERS are secondary to INFECTION and

> INFLAMMATION.. isn't that why we named this list what we did?

>

***Hi Barb - THIS list is called CFSExperimental :-)

Take care.

Bernie

June 4, 2006

>

> This is so oversimplified - do you take blood, muscle, brain, other

> nerves, muscle, blood, what? And what about viruses and prions and

> mycoplasms and other 'infectives' that don't 'grow' on a petri dish?

is my opinion, and my opinion is that you can test 'til

> you are 100 and take all the antibiotics made by man or nature and

> many of us, if not you personally, will still have CFS.

>

***Hi - I agree 110% with what you said.

Take care.

Bernie

June 4, 2006

>

> orry it's bothering you. Now you know how I feel when reading the

> same posts for years on immune deficiencies, nutritional

> supplementation like whey protein, and the latest, pages and pages

> and pages on glutathione.

>

> And respectfully, my whole point is people don't KNOW what they

> think they know when it comes to infections. Otherwise you'd all be

> freaking out.

***Hi Penny - Isn't it possible that by correcting an immune defiency,

getting our glutathione levels back to normal, etc., might possibly be

the key to correcting any infections which we might have, whether they

be viral or bacterial? Has it occured to you that maybe this is why

antibiotics aren't wiping out the infections, or the reason why our

bodies can't fight off a viral infection?

This list is called " CFSExperimental " . That is the whole point of this

group, is that we are experimenting trying to find answers, yet you

seem to believe that we are wasting our time. If that is the case, why

do you waste your time with us?

Lastly, is it somehow possible that maybe you are the one that

is " freaking out " by putting too much importance on infections??

Take care.

Bernie

June 25, 2006

,

Are you sure that you don't or didn't just aquire a sensitivity to

mold as a result of getting CFS? And why are you now calling it

Lyme? I think everyone in the ME world is being diagnosed as having

Lyme now LOL. Anyway, What I would like to know from anyone is that

some CFSers do not get many infections if any. So how can STAT1 do

this? Wouldn't STAT1 make it so that everyone DID get loads of

infections? Although Dr Kerr has said that the immune system is

overdoing things so maybe this is why some CFSers dont get many

infections. Meirleir said quite a few years back that there were two

types of CFSers, those with low NK cells and they get lots of pain

and infections and those with high NK cells and get no pain and have

hardly any infections. Anyway, if anyone knows a website to look at

for this STAT1, let me know. Talking of Lyme though, I got that

possible diagnosis too and when I was going through a bad patch I

tried some antibiotics and metronidazole and it did seem to make me

improve possible on two occasions. Trouble for me is proving

anything to myself whether it really was that or not but all I can

say is that I think it helped (the neurological symptoms wee quite

bad at the time and they went down a lot after taking ths ABX and

Met)

ps I have not commented on here for ages so am not completely

uptodate

> > >

> > > Hello Penny and Nelly, I have to chime in here. I lurk about

> > reading a lot of these posts and the truth for me is that you two

> > are the ones that make the most sense and you do it elequently at

> > that.

> > > I, too, have been ill for over 30 years now. Really ill.

> > Called it CFS for 28 years then tested at Igenex and now call it

> > Lyme. What's in a name anyway? I tested many years ago with

> > immunosciences and have antibodies to just about every pathegen

> > there is, but can that mean active infection or that I've dealt

with

> > it. I tested pos for Hep B and then had some further testing

done

> > and found that it was non active and I simply had the

antibodies. A

> > mold panal revealed a heavy load.

> > Peace, Edy

> >

> > Those of us in the Incline epidemic ALSO have different people

> > testing positive for every damn weird thing in the book, and

none of

> > these have been the common denominator so far.

> > Some are Lyme, others Myco, Most HHV6a, while CMV hits someone

else.

> > Interesting about the Gancyclovir, we tried that so many years

ago

> > that I can't even remember when it was. Huge pill, hard to

swallow.

> > Did nothing for any of us.

> > But of ALL of the people I saw dropping like flies, there was one

> > exposure that just well and truly kicked ass on everyone.

> > It was this darn " black mold " . And there were no exceptions.

> > So this " miracle " that I took a wild leap at was that, just as

much

> > as it made me hurt when I was around it - so I hoped that extreme

> > avoidance would make me feel commensurately better.

> > I'm not proposing that mold is the cause of CFS, I have no need

for

> > everybody to land on me like a ton of bricks, although they have

> > done so, just because they mistakenly interpreted what I said

> > as " believes that mold is the cause of everything " .

> > This weird response to mold is what I saw. Avoidance is what I

did,

> > and a better lifestyle was the result. And now I have Dr

Shoemakers

> > science to back me up on this.

> > I can't wait to find out if this " Cryptovirus " knocking out STAT

1

> > proteins is the ultimate disabler of the " underpinnings " that

allows

> > these various infections and susceptibilities. (some may recall

my

> > bridge-collapse analogy that I used to get people to forget about

> > stupid " stress and stressors " ).

> > So far, I've seen people improve a bit on ampligen and

antibiotics,

> > but it just wasn't as good as one would hope. I am doing

neither,

> > and have been able to control an amazing amount of pain, so until

> > the cause is found, and the cure is whupping butt on this

illness,

> > I'll keep on doing what I'm doing: Extreme Mold Avoidance.

> > -

> >

> > 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.

> >

June 25, 2006

Hi , If I were you I would get a Lyme test through Igenex. It's a little

pricey, but would settle the issue for you. Be Well, Edy

martin19671967 <martinpianist@...> wrote: ,