Penny - phone/net science

[Guest guest]

I agree with Tony - resolution/remissions/cures should always be

considered provisional.

Report of a resolution (meaning drugs may be ongoing) of less than a

years duration isnt worth anything to me.

I dont do lymenet terribly much - meaning in the last 6 months Ive

spent maybe 60h there, maybe less. After several hours you run across

people dropping in reporting multi-year full resolution. Not a lot of

em, but neither is it a shock when I see one more... I have seen maybe

8. And I know of a few others here and there.

[Guest guest]

Man, , I think this is so important. When ANYONE tells you they're

cured, first ask them how long they've been symptom free (and off

treatment). I've fallen for this so many times (hope is addictive)

from so many " doctors " and so many patients, just to realize they're

not really talking about cures at all.

If anyone tells me it's been less than a year, I just think to

myself, " wait and see " .

Hey, I wouldn't even mind life long treatment if it meant FULL

remission of the fatigue.

penny

> I agree with Tony - resolution/remissions/cures should always be

> considered provisional.

>

> Report of a resolution (meaning drugs may be ongoing) of less than a

> years duration isnt worth anything to me.

>

> I dont do lymenet terribly much - meaning in the last 6 months Ive

> spent maybe 60h there, maybe less. After several hours you run

across

> people dropping in reporting multi-year full resolution. Not a lot

of

> em, but neither is it a shock when I see one more... I have seen

maybe

> 8. And I know of a few others here and there.

[Guest guest]

As long as something can go dormant, I don't think a " cure " is the

right word that we could use to describe any long term remissions.

We might be able to go for years without a relapse and I would say

that I have been nearly symptom free for about 2 years. I have a

very full, pain free, active life now. BUT, I know there is still

work to do and I believe 100% that some sort of major stress could

put me right back on that slippery slope into hell. We will ALWAYS

have to be forever watchful for symptoms that the little buggers are

trying to sneak in the back door.

> > I agree with Tony - resolution/remissions/cures should always be

> > considered provisional.

> >

> > Report of a resolution (meaning drugs may be ongoing) of less

than a

> > years duration isnt worth anything to me.

> >

> > I dont do lymenet terribly much - meaning in the last 6 months

Ive

> > spent maybe 60h there, maybe less. After several hours you run

> across

> > people dropping in reporting multi-year full resolution. Not a

lot

> of

> > em, but neither is it a shock when I see one more... I have seen

> maybe

> > 8. And I know of a few others here and there.

[Guest guest]

Jelly, do you consider yourself in full remission and would you mind

sharing what you did to achieve it? We need all the positive stories

we can get so we can weigh the information and see if we can somehow

apply aspects of the successful treatment to our own situations. Do

you feel completely healthy at this point in time? If so, I may have

to see your doctor, since he's near me. Do you think he understands

the nature of bone infections and necrotic sinuses?

If you don't want to answer so many questions, my main question

really, is, what was/is your treatment regimen? (and I suppose your

dx)

penny

> > > I agree with Tony - resolution/remissions/cures should always

be

> > > considered provisional.

> > >

> > > Report of a resolution (meaning drugs may be ongoing) of less

> than a

> > > years duration isnt worth anything to me.

> > >

> > > I dont do lymenet terribly much - meaning in the last 6 months

> Ive

> > > spent maybe 60h there, maybe less. After several hours you run

> > across

> > > people dropping in reporting multi-year full resolution. Not a

> lot

> > of

> > > em, but neither is it a shock when I see one more... I have

seen

> > maybe

> > > 8. And I know of a few others here and there.

[Guest guest]

Exactly why I use the term symptom free.

I know I have latent virus I harbour- so why do we think we don't

harbour latent bacteria.

I probably still have dormant Lyme somewhere - but if they stay

dormant for say 30 years, I'll be happy.

Barb

> > > I agree with Tony - resolution/remissions/cures should always

be

> > > considered provisional.

> > >

> > > Report of a resolution (meaning drugs may be ongoing) of less

> than a

> > > years duration isnt worth anything to me.

> > >

> > > I dont do lymenet terribly much - meaning in the last 6 months

> Ive

> > > spent maybe 60h there, maybe less. After several hours you run

> > across

> > > people dropping in reporting multi-year full resolution. Not a

> lot

> > of

> > > em, but neither is it a shock when I see one more... I have

seen

> > maybe

> > > 8. And I know of a few others here and there.

[Guest guest]

I honestly don't know what full remission would feel like. I have

been sick so long, that I am not sure I know what good health

entirely feels like. I do know that once I started feeling better, I

realized just how gravely sick I was. Compared to how I feel now, I

believe I was on death's door.

The first thing " we " did was start me on heparin for my positive

hypercoagulation. I have recently learned that heparin works very

much like Benicar in that it blocks Angiotensin. That is probably

why TM is so adament about not using benicar and heparin at the same

time, even though he won't say so. I was on that for about a year.

Then I deceided to get retested for Mycoplasma, since it was

negative the first time, but I knew I had had Myco Pneumonia when I

first started getting sick. I went to the lab in Beverly Hills. I

came back positive for not just the pnuemonia but fermentans too. We

added ABX to the heparin. I herxed like no tomorrow. My ABX dose was

way to high with the heparin which makes ABX more potent and

penetrate better.

I eventually ended up on Minocycline at very low doses, like 3 mgs,

every other day, just so I wouldn't herx to bad. Ultimately that's

about it. I did not take the ABX constantly, pretty rarely actually,

my life just wouldn't allow it. I did the ABX for about 1 year, on

and off. I was feeling about 85% whole. Then I was put through MAJOR

stress.

My daughter who was 3 1/2 months pregnant started looking like she

was going to miscarry. Week after week, she didn't but there were

numerous trips to the ER in the middle of the night with serious

problems. She was on strict bed rest and I had to take care of her

and my grand daughter. While this was going on my son was planning

his wedding. The stress was so severe that for the first time in my

life I had to ask for anxiety meds.

On the night before the wedding we again ended up in the hospital

thinking for sure my daughter was going to loose what we now knew

was a little girl, 5 months along, there were contractions. My

daughter said to me, " Mom, if I loose her tonight I still want you

to be at the wedding " .

Well, the contractions stopped and we all made it to the wedding,

including my daughter and family of 11 who were staying at my house.

About 2 weeks later my daughter was finally put in the hospital,

because she had finally crossed the line, there was a 60% chance of

survivial for our tiny girl if she came now. 2 1/2 weeks later she

arrived, weighing, 1lb 15 oz. My daughter was in bad shape, as she

had lost nearly half her blood volume and had a complicated C-

section. Not only was the baby critical, but she had also lost half

of her blood volume. We spent the next 3 long, agonizing months in

the Neonatal Intensive Care, in a hotel, away from home .

About 2 weeks before we got to take our tiny girl home, my dad died.

It was horrible. The last time I heard his voice was over the phone

while I was sitting in a hotel room near the hospital. He was

screaming, out of his head in pain. He had a staph infection in his

blood, that had settled on his heart. He lived in Hawaii and they

needed to fly him to Oahu for a valve replacement. He died in flight

during the emergency transport.

The reason I tell you this is I want you to understand the extreme

stress I was under. I knew without a doubt I was going to crash hard

when this was all over. How could I not? But unbelievably, I never

did. Throughout the whole ordeal I stayed on the heparin only. I

couldn't take ABX and herx.

A few months after a I got home, we deceided we needed a new start

and we planned a huge move across country. I didn't know if I could

do it. About that time I deceided to try stopping the heparin and

replacing it with NattoK. It worked, I've been off the heparin for

over a year now. I have taken no ABX until just recently. I did

treat for yeast about months ago and that is when I seemed to gain

another 10% to bring me to 95% remission, where I am now.

That's it. I truly believe that the heparin is a HUGE key. I can't

type HUGE big enough. Right now I am pursuing Lyme. I have been

bitten over 20 times and now believe that this has been my problem

all along, even though I tested negative about 15 years ago. I

believe it is was made my dad so ill and weak. It is likely that my

mom has it, and that at the least both of my kids have it, maybe my

husband.

I TRULY wish people would pay more attention to hypercoagulation and

the benefits of heparin.

> > > > I agree with Tony - resolution/remissions/cures should

always

> be

> > > > considered provisional.

> > > >

> > > > Report of a resolution (meaning drugs may be ongoing) of

less

> > than a

> > > > years duration isnt worth anything to me.

> > > >

> > > > I dont do lymenet terribly much - meaning in the last 6

months

> > Ive

> > > > spent maybe 60h there, maybe less. After several hours you

run

> > > across

> > > > people dropping in reporting multi-year full resolution. Not

a

> > lot

> > > of

> > > > em, but neither is it a shock when I see one more... I have

> seen

> > > maybe

> > > > 8. And I know of a few others here and there.

[Guest guest]

Your dad had a staph infection and you want to blame lyme?

Neraly 50% of the population is colonised by staph, what the

symptoms are of being colonised and what the symptoms are of being

ill- is the problem with ALL OF MEDICINE.(no-one gets it)

tony

> > > > > I agree with Tony - resolution/remissions/cures should

> always

> > be

> > > > > considered provisional.

> > > > >

> > > > > Report of a resolution (meaning drugs may be ongoing) of

> less

> > > than a

> > > > > years duration isnt worth anything to me.

> > > > >

> > > > > I dont do lymenet terribly much - meaning in the last 6

> months

> > > Ive

> > > > > spent maybe 60h there, maybe less. After several hours you

> run

> > > > across

> > > > > people dropping in reporting multi-year full resolution.

Not

> a

> > > lot

> > > > of

> > > > > em, but neither is it a shock when I see one more... I

have

> > seen

> > > > maybe

> > > > > 8. And I know of a few others here and there.

[Guest guest]

Blame Lyme for my dad's ultimate death.....no. Staph defiently

killed him. What you may not know is that my dad had what they

thought was Lupus, not sure though. He was going to die soon and was

ready to die from whatever it was that he had suffered from for the

previous 11 years. He was terribly weakened from what ever this was.

He had had an angio gram for the congestive heart failure he had

which is often found in Lyme. That is where they believe the Staph

was introduced, about 2 weeks before he died. Staph wasn't a problem

his whole life, something else was. He was never a very healthy man.

Another thing you probably don't know Tony, is that we have a large

family cluster of pretty sick people. So my dad had Lupus. My mom

has what they think is MS and before that diagnosed FM for about 30

years, going all the way back to the place where ticks are

prevelant. I have been FM/CFS for 24 years and have been bitten by

no less then 20 ticks, 15-20 if those were found in my hair all at

once. We all hiked and lived in the same tick infested area at the

same time. I have 2 kids who are both sick. My son suffers from

tremors, has had pericarditis and a whole host of other problems

associated with Lyme since he was about 15, he's 24 now. My daughter

is very sick and struggles to raise he 2 kids, she is 26.

My husband is also showing symptoms for about 5 years with no

explanation from traditional medicine. With all my KNOWN tick bites,

Lyme seems like the next logical explanation to explore. It would

seem pretty stupid to ignore the possibility of Lyme, especially

since there is treatment, don't ya think? I mean considering my

history and all.

> > > > > > I agree with Tony - resolution/remissions/cures should

> > always

> > > be

> > > > > > considered provisional.

> > > > > >

> > > > > > Report of a resolution (meaning drugs may be ongoing) of

> > less

> > > > than a

> > > > > > years duration isnt worth anything to me.

> > > > > >

> > > > > > I dont do lymenet terribly much - meaning in the last 6

> > months

> > > > Ive

> > > > > > spent maybe 60h there, maybe less. After several hours

you

> > run

> > > > > across

> > > > > > people dropping in reporting multi-year full resolution.

> Not

> > a

> > > > lot

> > > > > of

> > > > > > em, but neither is it a shock when I see one more... I

> have

> > > seen

> > > > > maybe

> > > > > > 8. And I know of a few others here and there.

[Guest guest]

My jaw drops when I read your family history and your thinking staph

didn't, doesn't, isn't a major part of your family tree. Girl you

are my poster staph family.Forget looking for bacteria, waste your

money on identifying toxins your family tree sounds like a toxic

nightmare and unfortunately the staph species are right up there

doing this destruction.I am absolutely furious when people say

pericarditis- and then I THINK it's possably a virus that's no

longer there, is the doctors response. I went to hospital with a

note from my doctor requesting pericarditis to be looked for,

unfortuntely you get the no treatment just stories when you go to

our hospitals.Anyway good luck on your lyme quest...

tony

> > > > > > > I agree with Tony - resolution/remissions/cures should

> > > always

> > > > be

> > > > > > > considered provisional.

> > > > > > >

> > > > > > > Report of a resolution (meaning drugs may be ongoing)

of

> > > less

> > > > > than a

> > > > > > > years duration isnt worth anything to me.

> > > > > > >

> > > > > > > I dont do lymenet terribly much - meaning in the last

6

> > > months

> > > > > Ive

> > > > > > > spent maybe 60h there, maybe less. After several hours

> you

> > > run

> > > > > > across

> > > > > > > people dropping in reporting multi-year full

resolution.

> > Not

> > > a

> > > > > lot

> > > > > > of

> > > > > > > em, but neither is it a shock when I see one more... I

> > have

> > > > seen

> > > > > > maybe

> > > > > > > 8. And I know of a few others here and there.

[Guest guest]

How do you specifically get tested for staph? Other then a blood

test? My doctor does that and has tested some of us for staph. My

son came back negative. Is it like some of the other pathogens,

stealth like? Can we count on that test being accurate?

Then what is staph, isn't it a bacteria? It grew a vegetation on my

dad's heart valve. Treatment is again ABX, isn't it? I believe we

are only scratching the surface of the various pathogens resposnible

for making us sick. I actually have a little personal theory.

Accumulation of pathognes over the years are what cause us to

eventually break down and age. So many of us seem to be aging way

before our time. Treating pathogens may be the the

proverbial, " Fountain of Youth " .

My dad was 67 when he died, he looked to be 90. By the way, my

family is the poster family for Lyme too. I am ALWAYS open to

looking at new angles. Years ago, my dad had a bout with a majorly

swollen knee. He was told it was staph, even though they never

tested it. I have recently learned that Lyme can manifest in exactly

the same way. Lyme likes to swim in the synovial fluids. Six of one,

half dozen of another. They are both donuts/pathogens. Treatment is

pretty close to the same.

> > > > > > > > I agree with Tony - resolution/remissions/cures

should

> > > > always

> > > > > be

> > > > > > > > considered provisional.

> > > > > > > >

> > > > > > > > Report of a resolution (meaning drugs may be

ongoing)

> of

> > > > less

> > > > > > than a

> > > > > > > > years duration isnt worth anything to me.

> > > > > > > >

> > > > > > > > I dont do lymenet terribly much - meaning in the

last

> 6

> > > > months

> > > > > > Ive

> > > > > > > > spent maybe 60h there, maybe less. After several

hours

> > you

> > > > run

> > > > > > > across

> > > > > > > > people dropping in reporting multi-year full

> resolution.

> > > Not

> > > > a

> > > > > > lot

> > > > > > > of

> > > > > > > > em, but neither is it a shock when I see one more...

I

> > > have

> > > > > seen

> > > > > > > maybe

> > > > > > > > 8. And I know of a few others here and there.

[Guest guest]

Jelly

TReatment is not the same!! Staph tests for antigens are rediculous,

blood cultures are biased towards ignoring staphs and calling them

contaminants.-Staphs build resistance to the antimicrobial your

using quicker than any other bacteria.Lyme may alway's be penicllin

sensitive but all the people that grew it and worked on it never

felt this important!!!!!Lida Mattman that everyone quotes from her

books and her theories grew lyme played with lyme for half a century

but never ever offered a glimpse of how to treat.

I think with your son coming back negative is the biggest load of

crap testing I have ever heard. When you hve pericarditis you

culture the peri-tonial fluid but most doctors are too lazy to do

this.When you culture the peritonial fluid you then have your garden

variety everyday hospital grade INFECTIOUS ORGANISMS and not

bothering and wasting your life chasing the proverbial dead duck

diagnosis.

tony

-- In infections , " jellybelly92008 "

<herranenb@h...> wrote:

> How do you specifically get tested for staph? Other then a blood

> test? My doctor does that and has tested some of us for staph. My

> son came back negative. Is it like some of the other pathogens,

> stealth like? Can we count on that test being accurate?

>

> Then what is staph, isn't it a bacteria? It grew a vegetation on

my

> dad's heart valve. Treatment is again ABX, isn't it? I believe we

> are only scratching the surface of the various pathogens

resposnible

> for making us sick. I actually have a little personal theory.

> Accumulation of pathognes over the years are what cause us to

> eventually break down and age. So many of us seem to be aging way

> before our time. Treating pathogens may be the the

> proverbial, " Fountain of Youth " .

>

> My dad was 67 when he died, he looked to be 90. By the way, my

> family is the poster family for Lyme too. I am ALWAYS open to

> looking at new angles. Years ago, my dad had a bout with a majorly

> swollen knee. He was told it was staph, even though they never

> tested it. I have recently learned that Lyme can manifest in

exactly

> the same way. Lyme likes to swim in the synovial fluids. Six of

one,

> half dozen of another. They are both donuts/pathogens. Treatment

is

> pretty close to the same.

>

>

> > > > > > > > > I agree with Tony - resolution/remissions/cures

> should

> > > > > always

> > > > > > be

> > > > > > > > > considered provisional.

> > > > > > > > >

> > > > > > > > > Report of a resolution (meaning drugs may be

> ongoing)

> > of

> > > > > less

> > > > > > > than a

> > > > > > > > > years duration isnt worth anything to me.

> > > > > > > > >

> > > > > > > > > I dont do lymenet terribly much - meaning in the

> last

> > 6

> > > > > months

> > > > > > > Ive

> > > > > > > > > spent maybe 60h there, maybe less. After several

> hours

> > > you

> > > > > run

> > > > > > > > across

> > > > > > > > > people dropping in reporting multi-year full

> > resolution.

> > > > Not

> > > > > a

> > > > > > > lot

> > > > > > > > of

> > > > > > > > > em, but neither is it a shock when I see one

more...

> I

> > > > have

> > > > > > seen

> > > > > > > > maybe

> > > > > > > > > 8. And I know of a few others here and there.

[Guest guest]

> Jelly

> TReatment is not the same!! Staph tests for antigens are rediculous,

....

>you then have your garden variety everyday hospital grade INFECTIOUS

ORGANISMS.

I get it. I know that in me, staph and strepp are at the root of my

evils. I just don't know what to do about it, still. We had to dig

through some virus and chlamydia (a year to get the chlamydia) to get

back to it, but back it seems to be and it also seems that this staph

bug is what starts me on a year-long cycle of now predicatable

infections. It's as if they are co-dependant between themselves. I

know it prolly sounds whacko.

Penny - you mentioned amoxicillian in a previous post as an

inappropriate treatment for someone (can't remember 'zactly) I read

that post wwith interest but I never figured out the WHY you thought

it was a poor choice?

Over the last year I have taken doxy, amoxy and I still keep cycling

thru a whole extended family of bugs. It takes between 10 months and a

year to complete a cycle of staph and strepp, then chlamydia, then

yeasts, then parasites then back to staph and strepp. Getting the

metals out really helped to un-cloud the symptomology.

So really, all I can do is keep doin' what I am doing - trying to

hammer the buggers on the head as they pop out of their respective

holes.

<<singing Li'l Bunny Foo-Foo Hopping Thru the Forest. Picking up all

the field mice and BOPPing then on the head!>>

I just don't have any ideas how to locate MD's who have a clue.

Without endless funds, I can only imagine what kinds of testing could

be had, assuming I could find someone to do it.

So, what do you-all suggest?

Ok, so we know what is probably wrong, and we know what probably needs

to be done, but how do we go about doing it?

Confused,

*S*

[Guest guest]

I'm wondering if you might insert references or data in lieu of the

exclamation marks. So far I haven't seen any data to back up many

of the points you are making... Some of what you say has the

potential to be interesting, but that cliche line from Jerry Maguire

still holds, " Show me the money. "

> > > > > > > > > > I agree with Tony - resolution/remissions/cures

> > should

> > > > > > always

> > > > > > > be

> > > > > > > > > > considered provisional.

> > > > > > > > > >

> > > > > > > > > > Report of a resolution (meaning drugs may be

> > ongoing)

> > > of

> > > > > > less

> > > > > > > > than a

> > > > > > > > > > years duration isnt worth anything to me.

> > > > > > > > > >

> > > > > > > > > > I dont do lymenet terribly much - meaning in the

> > last

> > > 6

> > > > > > months

> > > > > > > > Ive

> > > > > > > > > > spent maybe 60h there, maybe less. After several

> > hours

> > > > you

> > > > > > run

> > > > > > > > > across

> > > > > > > > > > people dropping in reporting multi-year full

> > > resolution.

> > > > > Not

> > > > > > a

> > > > > > > > lot

> > > > > > > > > of

> > > > > > > > > > em, but neither is it a shock when I see one

> more...

> > I

> > > > > have

> > > > > > > seen

> > > > > > > > > maybe

> > > > > > > > > > 8. And I know of a few others here and there.

[Guest guest]

I feel your pain, there Sue. when I realized that my " CFS " was

really caused by an infection (due to improvement on abx), I

couldn't get anybody to believe me. Except Tony.

It was a slow, step by step process. I had to send swabs to the lab

in Australia to have anything to show to support my theory. It came

back with a number of toxic organisms, including the staph that the

labs here would ignore (except Esoterix - Shoemaker's lab in Texas).

Turns out the staph they cultured and grew was resistant to 12 of

the 14 abx tested. That ain't everyday, garden variety staph. Same

with pseudomonas.

This is where the big frustration lies. Finding doctors who will

consider the idea reasonable, --that we're actually suffering from

treatable infections, not vague autoimmune or mental conditions. And

who will then test us for organisms and try to find a corresponding

infectious condition to treat. That's why I was keenly interested in

lyme patients, because they have the same symptoms I and many others

have, but they also have doctors pro-actively trying to treat them.

So I started looking for various sources of my own infection. I'd

already tested negative for lyme so tried to find other infectious

illnesses that might explain why I was sick and responded so well to

abx.

I didn't have typical sinus symptoms (only migraines) so didn't

consider that (mistakenly). I'd had an infected tooth once years ago

after having a crown put on it, and I could still feel it slightly

at times. At the time, I was being seen by an acupuncturist (who

used to be an RN) so I asked her if she thought there was any chance

this tooth could be feeding a chronic infection. Actually, she did.

She'd had a dental infection that put her flat on her back for 9

years. She told me that if that was my problem, that acupuncture

wasn't going to be able to fix it. She sent me to an orafacial pain

and autonomic nervous system expert who she thought might help (I

didn't have any significant pain, but did have autonomic

dysfunction), and I ended up going down a very long road until

finally realizing that not only is a good portion of my jaw loaded

with infection, so are my sinuses. I then met a doctor, through a

friend, who did the bone biopsies for me. He was totally

sympathetic, because he also had been struggling with osteomyelitis

of the jaw, and shortly after my biopsy results came back positive,

he died of a seizure caused by his infection. So not only did I lose

the connection to a wonderful man, I lost a doctor and an ally.

Anyway, it's a hard situation to treat, because the organisms eat

right through the sinus walls, burrow into the bones, and the miles

and miles of dentin tubules (tiny passageways through jaw bone that

don't exist in other bone) allows the organisms to spread quickly

when disturbed. Normally, surgery is the answer in bone infection,

but the guys who are good at it, orthopedic surgeons won't touch

people's heads (although occasionally you'll find somebody who will

at least advise on treatment). And oral surgeons, honestly, most

don't have a clue, aren't interested in infection, and cause more

damage than good, spreading the infection, not properly treating

with abx, etc. So if you don't have the absolutely best situation, a

surgeon who understands bone infection, and an i.d. doc who will

prescribe the abx based on cultures, and hyperbaric oxygen, etc.,

the chances are kind of slim that surgery's going to help. Although,

sometimes, removing an infected tooth or root canal can help.

That's why I'm inspired by people like Tony, who got well without

surgery (he did pull a few teeth), without i.v.s (except one round).

He and Barb both used mainly oral abx and other complementary

treatments and I feel that I've got to get myself pretty far down

that road before ever having another surgery (unless I'm absolutely

convinced of the doctor's competence).

So the whole point is, if you can locate some kind of infectious

illness that you fit the description of and can get a diagnosis for

it, then you're finally on your way to getting some kind of

treatment. It might not be 100% right, but at least you're no longer

dealing with the stigma of CFS, which no one takes seriously. If

you've got lyme, and can find another infectious dx, then you've got

that much more information to help you guide your treatment, that

many more docs who can be on your team, and on your side.

If you look at that phage website, there are LOTS of infectious

illnesses out there. If any of them seems similar to your situation,

or if you think you perhaps have experienced dental trauma in the

past or have root canals (a lot of people even believe that the

removal of wisdom teeth is one source of festering infection), it

can get you a foot in the door for treatment. It's still a battle,

unless you get lucky and find a really smart doctor, or at least a

really cooperative doctor. But you go in and you say, I have this

nasty symptom (which fits said condition) and I want to be tested

for...(said condition). If you're positive, you're on your way. If

not, then you go in with another serious symtpom, until you get

something treatable. Stick to one or two big symptoms at a time.

Give them something to work from. Something they have to take

seriously (not general fatigue, etc.). For example, the dx I got,

chronic osteomyelitis (which probably many people will never know

they also have) is taken very seriously, because it's considered

life threatening. So that's how I got i.v. treatment, and insurance

coverage etc. Unfortunately, months of i.v treatment gave me a

pretty good remission, but didn't cure me. But I didn't have the

best team, either.

You've also got to be firm with the docs in what you want them to

do. Somehow, we have to start directing our treatment approaches,

because most docs know almost nothing about how difficult it is to

rid us of these chronic infections. I.E, you don't want the " quick

fix " (i.e. surgery) without any antibiotic back up. You want

treatment based on good lab work, and monitored with good labwork.

So it means that if you do get a dx, then you read as much as you

can and talk to as many people as you can who've had the treatmetns

that may be recommended to you, and make sure you cover all your

bases.

Failing all that, then you end up trying to make educated guesses

about the most effective abx for you, based on how you respond.

That's really hard, but I end up doing that a lot. Because when I'm

on a good abx, I feel way better. And I have a very helpful doc

who's willing to let me take the lead in my treatment, because so

far, since meeting him, I have improved. I've also relapsed, but the

majority of my symptoms, except fatigue, have greatly improved.

I guess the hardest part is if you're suffering from fatigue, both

mental and physical, and brain fog on top of it, it's really hard to

be proactive in finding treatment. That's why I keep hanging around,

harping on these things. When I first was dx'd I could barely make

sense of anything I read. Actually, it's why I'm grateful to Tony,

because even though I couldn't understand a word of what he was

talking about, my doctors actually could (he's better on the phone :-

). And once I finally got some abx in me (Cipro) and my brain

started working again, then I could start getting more proactive in

my own treatment. I still struggle with the fatigue. When I'm

fatigued (like the last 6 weeks) I can't even make the appointments,

let alone think about how I'm going to talk to a doctor.

This is why I'm so passionate that we need to get our doctors aware

of how many chronic infection illnesses are really out there and how

they are contributing to this growing epidemic of chronically ill

people. They need to wake up so they can take care of us! I'm tired

of taking care of my doctors!!!

penny

> > Jelly

> > TReatment is not the same!! Staph tests for antigens are

rediculous,

> ...

> >you then have your garden variety everyday hospital grade

INFECTIOUS

> ORGANISMS.

>

> I get it. I know that in me, staph and strepp are at the root of

my

> evils. I just don't know what to do about it, still. We had to dig

> through some virus and chlamydia (a year to get the chlamydia) to

get

> back to it, but back it seems to be and it also seems that this

staph

> bug is what starts me on a year-long cycle of now predicatable

> infections. It's as if they are co-dependant between themselves. I

> know it prolly sounds whacko.

>

> Penny - you mentioned amoxicillian in a previous post as an

> inappropriate treatment for someone (can't remember 'zactly) I

read

> that post wwith interest but I never figured out the WHY you

thought

> it was a poor choice?

>

> Over the last year I have taken doxy, amoxy and I still keep

cycling

> thru a whole extended family of bugs. It takes between 10 months

and a

> year to complete a cycle of staph and strepp, then chlamydia, then

> yeasts, then parasites then back to staph and strepp. Getting the

> metals out really helped to un-cloud the symptomology.

>

> So really, all I can do is keep doin' what I am doing - trying to

> hammer the buggers on the head as they pop out of their respective

> holes.

> <<singing Li'l Bunny Foo-Foo Hopping Thru the Forest. Picking up

all

> the field mice and BOPPing then on the head!>>

>

> I just don't have any ideas how to locate MD's who have a clue.

> Without endless funds, I can only imagine what kinds of testing

could

> be had, assuming I could find someone to do it.

>

> So, what do you-all suggest?

> Ok, so we know what is probably wrong, and we know what probably

needs

> to be done, but how do we go about doing it?

> Confused,

> *S*

[Guest guest]

Hi penny,

I always look for your posts because we share a lot of the same

symptoms and experiences.

I have had cysts on my joints for over 20 years. They were dx'd as

osteo-arthritis but I think it is really osteo-mylitis. What kind of a

Dr should I see to get a dx of that? I am Medicare-only. Where are you

located that you sent samples to Australia?

I agree, I need to find a way to get a straight Dr to look at me. I

would not mention the CFS/FMS because they just throw up hands when

*that* walks in the door.

For me, chelating the metals out really opened the door to more

accurate diagnosis because it removed the " clutter " of brain fog and

depression, also because Mercury hides and covers-up what is really

thriving in terms of bugs.

I didn't really start to improve much until the metals came out, but

now, abx seems to work and it never did, before.

What was the thing about amoxicillian? I took it recently and it was

like taking sugar. I think my bugs just morphed immediately as I have

been so antibiotic resistant for so many years.

Hard to say what is going on.

Cheers,

*S*

> I feel your pain, there Sue. when I realized that my " CFS " was

> really caused by an infection (due to improvement on abx), I

> couldn't get anybody to believe me. Except Tony.

[Guest guest]

Oh yeah, I'm sorry, I forgot to respond to the earlier amoxicillin

question. I'm not saying it's a bad drug. Might work great for some

people, if their bugs are sensitive to it. If so, that's great,

because it's one of the earlier generation drugs, it's cheap,

relatively few side effects, etc. It's just been mis-used a lot, and

I'm pretty sure there are already a lot of amoxicillin resistant

bugs floating around out there.

And I was doubting that my friend, who almost died of a staph

infection almost 50 years ago, and has been suffering with various

symptoms ever since, who is also at risk for heart problems from

dental bacteria, is going to be all that sensitive to 2 days

treatment (which is what they sometimes do with dental work). I feel

that he certainly shouldn't be given just any old abx w/o more

investigation.

I truly think it's a numbers game for a lot of these docs. They kind

of make a half-donkey effort to cover themselves, and hope the

patient's lucky and doesn't have a heart attack from the dental

bugs. Plus, my friend's got an HMO, which of course means that first

and foremost, the contract doctors do whatever they can to keep the

costs of medical care down.

Hmmm, regarding your cysts on the joints. I'd check out some of the

osteonecrosis forums (where they talk a lot about hips, as well as

other places). See if you can get leads on some good Infectious

Disease specialists. You've really got to be like a detective to

find a doc who'll help you. There are also doctors out there who

will treat arthritis with abx. If you can find one who will do

biopsies, and let the results guide your abx choices, I think you'll

have a much better chance of getting somewhere. That's what I see

anyway.

I live in California. At the time, Tony was friends with the

microbiologist at a lab there in Australia and he hand carried my

nasal swabs over to them for the species i.d. and abx sensitivities.

For a while the lab started taking specimens directly from American

patients, but then I think that kind of fell apart because Customs

started holding things up. I sent Tony a swab that he was going to

check for me once, and it didn't show up for over 6 months! Of

course, the bugs were still alive!!!

penny

> > I feel your pain, there Sue. when I realized that my " CFS " was

> > really caused by an infection (due to improvement on abx), I

> > couldn't get anybody to believe me. Except Tony.

[Guest guest]

Tony,

Sorry it took so long to get back to this. I answered all of your

posts yesterday and they didn't show up on the board. Trying again

today.

If treatment is not the same and I am the poster child for staph

then why am I doing so well with heparin and a few ABX?

Is there a better way to test for staph that is more accurate? Were

you positive?

> > > > > > > > > > I agree with Tony - resolution/remissions/cures

> > should

> > > > > > always

> > > > > > > be

> > > > > > > > > > considered provisional.

> > > > > > > > > >

> > > > > > > > > > Report of a resolution (meaning drugs may be

> > ongoing)

> > > of

> > > > > > less

> > > > > > > > than a

> > > > > > > > > > years duration isnt worth anything to me.

> > > > > > > > > >

> > > > > > > > > > I dont do lymenet terribly much - meaning in the

> > last

> > > 6

> > > > > > months

> > > > > > > > Ive

> > > > > > > > > > spent maybe 60h there, maybe less. After several

> > hours

> > > > you

> > > > > > run

> > > > > > > > > across

> > > > > > > > > > people dropping in reporting multi-year full

> > > resolution.

> > > > > Not

> > > > > > a

> > > > > > > > lot

> > > > > > > > > of

> > > > > > > > > > em, but neither is it a shock when I see one

> more...

> > I

> > > > > have

> > > > > > > seen

> > > > > > > > > maybe

> > > > > > > > > > 8. And I know of a few others here and there.

[Guest guest]

Sinus swabs are alway's revealing staphs. It' would be impossable

for you not to grow any unless your like me on absolute nuclear

attack. Actully chaemo possbly targets these same cells so I can't

say.

tony

> > > > > > > > > > > I agree with Tony -

resolution/remissions/cures

> > > should

> > > > > > > always

> > > > > > > > be

> > > > > > > > > > > considered provisional.

> > > > > > > > > > >

> > > > > > > > > > > Report of a resolution (meaning drugs may be

> > > ongoing)

> > > > of

> > > > > > > less

> > > > > > > > > than a

> > > > > > > > > > > years duration isnt worth anything to me.

> > > > > > > > > > >

> > > > > > > > > > > I dont do lymenet terribly much - meaning in

the

> > > last

> > > > 6

> > > > > > > months

> > > > > > > > > Ive

> > > > > > > > > > > spent maybe 60h there, maybe less. After

several

> > > hours

> > > > > you

> > > > > > > run

> > > > > > > > > > across

> > > > > > > > > > > people dropping in reporting multi-year full

> > > > resolution.

> > > > > > Not

> > > > > > > a

> > > > > > > > > lot

> > > > > > > > > > of

> > > > > > > > > > > em, but neither is it a shock when I see one

> > more...

> > > I

> > > > > > have

> > > > > > > > seen

> > > > > > > > > > maybe

> > > > > > > > > > > 8. And I know of a few others here and there.