Re: Re: Autopsy results

[Guest guest]

Sorry if I misled you on the mycos. I guess I'm just thinking of them being smaller and less easy to identify (while some people think there are only certain strains of mycoplasma, I've seen enough studies to believe that there are many bugs that operate in the same manner, such as cell wall deficient organisms). I don't know if this is also the case with mycobacteria or not. But obviously, whatever she had, it wasn't identified by standard testing. But what's new there, right? penny <usenethod@...> wrote: Thanks a lot for the info, Bob. Since there appear to be virtually no modern CFS autopsies in the literature (which truly beggars belief, regardless of whether there are any regular positive findings), this would seem to be a priceless glimpse. I wish I knew more about autopsy findings in normals, since of course it's the relative abnormalities vs normals that is significant. "Dense fibrosis" in the meninges does sound like it's likely to be well-distinct from normal.Too bad no brain sections could be stained for gliosis (a key sign of inflammatory activity in the brain itself)? Or whatever they do; I'm not too sure how that works, or what exactly is available and what it can ascertain that routine examination might not.> Actually another reference mentions mycobacteria as a possible culprit. I'm not terribly familiar with those; does

anyone know if they the same as or related to mycoplasma?They are separate groups (and both very ancient and distinctive ones), so I think the relationship is minimal.Ordinary Mycobacterium tuberculosis, the cause of TB, often infects the gut and/or meninges, instead of or in addition to the classic focus which is of course the lungs. I think classic TB meningitis tends to be rapidly fatal for the most part. There are other Mycobacteria that can infect humans, most of which tend to be much less virulent... M leprae (leprosy) of course, and then the whole set of much rarer ("atypical") ones like M. avium... more common nowadays because they occur frequently in AIDS.

[Guest guest]

Hm, I believe they mentioned

doing some brain sections but not specifically what they did with

them. Presumably some of that was sent our for toxicology. I have no

idea if they retain those samples for later analysis or whether they

are available for outside study, but I may look into that or see if her

doctor will. I would like to see that tissue looked at by some more

knowledgeable eyeballs if possible. The lung tissue as well. I'll let

you know if anything ever comes of it. My guess though is that they

save the slides / imaging but dispose of the source materials. It

would probably be prohibitively expensive to retain and preserve actual

tissue samples on a widespread basis.

--Bob

wrote:

Thanks a lot for the info, Bob. Since there appear to be virtually no

modern CFS autopsies in the literature (which truly beggars belief,

regardless of whether there are any regular positive findings), this

would seem to be a priceless glimpse.

I wish I knew more about autopsy findings in normals, since of course

it's the relative abnormalities vs normals that is

significant. "Dense fibrosis" in the meninges does sound like it's

likely to be well-distinct from normal.

Too bad no brain sections could be stained for gliosis (a key sign of

inflammatory activity in the brain itself)? Or whatever they do; I'm

not too sure how that works, or what exactly is available and what it

can ascertain that routine examination might not.

> Actually another reference mentions mycobacteria as a possible

culprit. I'm not terribly familiar with those; does anyone know if

they the same as or related to mycoplasma?

They are separate groups (and both very ancient and distinctive

ones), so I think the relationship is minimal.

Ordinary Mycobacterium tuberculosis, the cause of TB, often infects

the gut and/or meninges, instead of or in addition to the classic

focus which is of course the lungs. I think classic TB meningitis

tends to be rapidly fatal for the most part.

There are other Mycobacteria that can infect humans, most of which

tend to be much less virulent... M leprae (leprosy) of course, and

then the whole set of much rarer ("atypical") ones like M. avium...

more common nowadays because they occur frequently in AIDS.

[Guest guest]

She first contracted CFS at

the age of 24, in 1976. She eventually got out of the acuteness of

that (recurring fevers, etc) in the early 90's to where if she didn't

push too much she could kind of function. But then there was a very

gradual slide into environmental illness / multiple chemical

sensitivity beginning in roughly 2000 and accelerating in '03. In '04

she started having breakdown of collagen synthesis with the result that

her joints and ligaments were easily subluxated or strained and

recovered very slowly. That got gradually worse until the end. She

could barely walk most days. In the fall of '05 her autonomic nervous

system went haywire and she started having a lot of arrhythmias, panic

attacks, and other things of that nature that she had had absolutely

zero of in the prior 28 plus years. During the whole time the

neurological symptoms got worse.

The MCS became such a huge problem that the CFS seemed like a relative

cakewalk, and that's saying a lot. At the end she was a "universal

reactor" and living in a bubble, reactive to most foods, drugs, etc.

That is why antibiotic treatments were almost impossible. She was

getting some benefit from Biaxin early in '07 and it was going so well

that the doc decided to add Ceftin to the mix, as she had tolerated

that fairly well recently (and, it was the ONLY other antibiotic you

could say that about). But the combo put her into a tail spin

and she had a gall bladder attack out of the blue (zero problems

prior). Later I figured out that abx in the Ceftin family have been

known to cause the formation of bile "sludge" as the drug precipitates

out in the bile.

At any rate the gall bladder problem was bad enough that the doc was

recommending surgery despite all her problems. Referred us to a

supposedly knowledgeable surgeon who turned out to be located in a

brand new building that was still being painted. Couldn't even get

into the place. She looked at me and said, "I'm screwed, aren't I?".

I think after that she just lost the will to live and she was gone

within a couple of weeks. She threw another gall stone just three days

before her death, although the autopsy didn't seem to suggest she was

in huge trouble there, as in, ready to perforate or spread overt acute

infection around her abdomen. The general idea of surgery was to do it

while it was still somewhat elective rather than in the middle of a

weakening crisis. But I think she was already on a knife edge and the

surgery probably would have finished her off.

So, as usual, the situation is perfectly muddy. You could argue that

adding the Ceftin was the start of a "domino effect" that led to her

demise, but she was so fragile by then that if it hadn't been that it

would probably have been something else. It's very much like the

scenario with the death of the elderly. People don't die of old age,

they die because some insult like a broken hip or pneumonia overwhelms

what's left of their vitality. Basically, the bugs win. That's what

happened to her, really. Back in around '98 a brain MRI was done on

her and they remarked that, aside from the "punctate lesions" they saw,

she had enlarged sulci such as you would find in a woman in her 80's.

Her brain was shriveling up even then.

Especially sad given that her IQ was originally 180. This is a woman

who got her Computer Science degree in 3 years, with a perfect 4.0

GPA. The basis for her disability was a measured drop in IQ to 102.

To tell the truth she sensed the end coming because when the Biaxin

bought her about 3 relatively "good" weeks where her mind was fairly

clear, she worked obsessively on putting her affairs in order and

completing a photo scrapbook of her life, things like that. She

apologized for putting all her energy into that but she felt she had

to. I knew what she was thinking, and besides, it gave her something

to focus on.

As to your exact question: what set off the decline after she'd been

stable? Can't point to any one thing. We traveled to Puerta Vallarta

in '97 and stayed in a hotel room that proved to be very moldy. That

may have started the neurological "kindling" process thought to be at

least partially behind MCS. But I can't say that she really had any

recognizable MCS symptoms until at least '99.

One could argue that "stirring the pot" when things were fairly stable

was a bad idea. We had more money available and went to see

in Tahoe, Cheney in SC, things like that. Cheney got her onto a 6

month course of Heparin in '99, after diagnosing excessive fibrinogen

("thick blood"). That made her very sick and she finally quit. It's

possible that doing this "uncovered" a lot of infection that her body

had "swept under the carpet" using the very fibrinogen we were getting

rid of.

I always felt that her body had jerry-rigged itself to keep her alive

and we were always playing with fire trying to "correct" that without

knowing exactly what we were doing. But had it in the back of

her mind that she was getting older and it was "now or never" if she

was ever going to get better (and not get worse as she aged). She

wanted to see the top people in the field. For better or for worse,

she got her wish. She was very much a risk taker. Most of her gambles

paid off. This one didn't.

Was it Borellia? In the end we became convinced that was the

explanation for most of what was going on. She was positive for it,

and there is a lot of overlap between chronic lyme and CFS. It could

have been Borellia all along, or CFS weakened her to let the Borellia

really get hold of her. I will say though, that I very much doubt that

it was Borellia exclusively. She was as I said positive for several

mycoplasma varieties, chlamydia pneumonia, HHV6, etc. She was overrun.

MCS is a complication we are seeing increasingly in advanced CFS,

particularly in people who have been ill a long time or are over 50,

both of which were true of . It probably just reflects that the

bugs have more completely compromised the gut and the blood-brain

barrier, letting in things that should not be let in; and that the

ability to detox is eventually overwhelmed by an excessive body burden

of those toxins plus the toxins produced by various invading

organisms. At some point, it creates a perfect storm.

--Bob

jill1313 wrote:

Hi Bob. Just curious, in a post a long while ago you said she'd

held

stable for many years, and then started to decline. Do you know what

set that off? Was it for instance a treatment that adversely affected

her and from which she didn't recover?

It does sound like borrelia but who knows.

[Guest guest]

Jill,

Hindsight is always 20/20. I'm not faulting for taking risks.

On balance, that side of her nature probably helped her stay alive as

long as she did.

Your post reminds me that she did take and benefit from GG.

I suspect she had at least intermittent vasculitis as well. Some of

the MRI findings were consistent with vasculitis (but inconclusive).

But despite the fact she was absolutely NOT a wuss about pain or about

invasive procedures, she found the IV GG very painful and preferred IM

GG even though it was probably less effective. And when this past

spring we finally found a (barely) acceptable clinical environment she

could tolerate for getting IVs (the one where she had got the GG

closed), within about 3 treatments she developed a very severe

vasculitis-like pain and swelling in her arms and we had to stop, and

it took about a month to calm down. It might have been infection, or a

reaction to something she was getting or to the plastic tubing that led

to infection, who knows. (She was getting magnesium sulfate IVs due to

severe RLS).

I am sorry to hear you are even a little chemically sensitive. I don't

know why it is that once that develops, every possible environmental

catastrophe and stressful situation seems to glom onto you (i.e., the

person who needs it least of all). The universe is a crazy place.

One of 's most vexing problems was our next door neighbor's dryer

exhaust, which would fill our yard with great clouds of fabric softener

that would often leak into our attic and from there into our house.

Fabric softener is one of the most toxic things for most MCS people.

The neighbors are elderly Chinese and they barely speak English so I

could never have an intelligent conversation with them about it. They

smiled and nodded but did nothing. They started doing this air

pollution (to the point it was causing even me a bit of distress) about

the time 's MCS became severe. Bizarrely, they quit about 30 days

before she died and haven't done it since. Go figure [sigh].

Anyway, may the new year be better for us all. As for 2007, good

riddance to bad rubbish. I still haven't figured out how I'm going to

reinvent myself without her, but thank God she is not in agony anymore.

Yes, at least we loved each other and held nothing back. There's that.

--Bob

jill1313 wrote:

Well that's around the time lyme manifested itself in old lyme

connecticut, however, recurring fevers does not sound like lyme, maybe

babesia, or other tickborne illness or virus (not mutually exclusive).

I understand the gradual slide,although I think life stressors play a

large role. Sometimes indeed a trip, a mold exposure, or an

experimental treatment such as the ones you mention that gave her

fevers etc. In order to survive at all one must take risks and its

hard to know where to draw the line. In my case experimenting with

salt/c was a dreadful stupid mistake lulled into false security by a

fellow sufferer who was delusional about having "herxheimers" when he

was destroying himself with the protocol (sort of like Marshall

Protocol adherants, end up in hospital, still believe its

immunopathology after years etc). But also in my case, I was exposed

to severe environmental stresses from the time I got lyme

onwards--horrific demolition in my building, constant jackhammers,

constant invasion, eight leaks and floods in 18 months, ceiling coming

down, noise, dust--building "half renovating" the pipes so that for

two winters they banged all night long and I had to sleep in my

livingroom--a dentist fracturing the socket where she pulled my

tooth

causing months of excruciating pain etc etc., oh yes, and a stupid

carpenter using the most toxic silicone caulk on the interior of my

windows, without venting, so that it poisoned everything in the room

and I couldn't use that room for a year (I do have some chemical

sensitivities but he was a total ignoramus). Even healthy people would

get sick with the amount of stress I had. I know I got a lot sicker

after all that and salt/c, whereas before I was adding one thing at a

time and seeing slow improvements.

When you are compromised already any life stress INCLUDING an

experimental treatment can be a problem from which you can't bounce

back. Your insight into heparin/fibrinogen is an example. As for actos

it inhibits NF Kappa B, generally and that may not be a good thing if

it suppresses something the immune system needs. Maybe some of our

systems survive best through fibrin and inflammation thus keeping the

bugs in check. This may not be as ideal a solution as a strong immune

system just fighting off the bugs and putting them into latency from

the get go, but it may be better than nothing. But it is hard to

resist the charisma of certain doctors or others when you're desperate.

I always feel in such cases, it is a real balancing act between fear

and risk, between activity and rest etc. Right now I'm having my

boyfriend do all my shopping for me or else online. I don't want to go

into stores or be around people. OTOH I'm taking daily walks in the

park, a mile or more, well not daily, only when it's relatively sunny

out. If it's raining I don't. I try to commune with nature. I have had

to decide how to parse out my energy for "recovery" from incredible

onslaughts. However I do think in cases like hers, or mine, where for

instance I too cannot tolerate antibiotics and am sensitive to most

drugs, boosting therapies like hyperbaric oyxgen, IV glutathione, IVIG

in small amounts, are very important. I know a lymie/CFS/MCS artist

who almost died two years ago and had vasculitis--maybe sort of

like

your wife. Anyway she was put on very low dose steroids and then IV

doxy twice a week starting at 20 milligrams, an incredibly low dose.

Slowly she got better, then added in transdermal rifampin. She is also

on very low dose valcyte now, and weaning off the steroids as after a

few years caused pre diabetes and breakthrough thrush. She's getting 5

grams IVIG (something I myself chose a few years ago--exactly that

small amount) every other week. We discovered that for folks like us

less is more, and boosting therapies important.

Not sure this helps at this late date. It's all a crapshoot as we

don['t really know what bugs we're dealing with esp. tickborne and

once they're past the acute stage its hard to know what to do, IF you

are sensitive. Those with robust livers and systems can drown

themselves in lots of drugs and get better, but a small portion of us

are not capable of that.

Anyway she had 13 years with someone who really loved her that's more

than some of the healthiest folks running around.

[Guest guest]

She had a CFIDS/ME diagnosis

from early on. Lyme was identified around 2003 which is about the time

her health started to really go south. By then she was getting

seriously chemically sensitive and starting to have trouble with drugs

/ abx so it was too late for an all out assault.

It's possible it was Lyme all along but I tend to think that Lyme may

have been an opportunistic infection and while it ended up being the

main problem, it was not a root cause. But ... "we see through a glass

darkly" ... I could be wrong.

--Bob

Barb Peck wrote:

Bob:

Thanks for sharing the results with us.

Was she ever treated for Lyme?

Lyme is ALWAYS neurological if infection goes beyonf a month. That's

why if not caught upon initial presentation - I think it can be

really devasating later on to the brain. I think they make a bee-line

for the brain.

Barb

--- In infections ,

Bob Grommes

<bob@...> wrote in part:

If you look this up in the mainstream literature there are three

organisms commonly suspected as causing "fibrosis of the meninges":

tuberculosis, syphillis -- and good old Borrelia burgdorferi, better

known as Lyme Disease. Guess which of the three I suspect? Guess

which one had tested positive for?

[Guest guest]

Barb,

I don't have any evidence that argues against Lyme being the cause of

her sensitivities. In fact there is circumstantial evidence that

argues in favor of that theory.

If I recall correctly, she was negative for Lyme prior to developing

MCS, although it was negative by western blot or some such, and she

never got a test that is considered by the current thinking of chronic

Lyme doctors to be more definitive (IgenX in her case) until '03 or so,

and that was arguably positive -- depending again on who wants to

know. She was positive only in certain bands but as I understand it

there is honest disagreement about how important / definitive certain

bands are or what combinations of bands crosses some threshold of

clinical significance. In other words this dispute about what

constitutes a valid diagnosis that accounts for the gulf between those

who do or don't "believe" in "chronic" Lyme extends into the chronic

Lyme camp as well.

This lack of consensus and clarity certainly didn't help us know how

much risk to take or how much misery to endure in trying to deal with

Lyme and other pathogens. We never knew how urgent the problem was or

how much (if any) progress we were actually making against it. We also

ended up being held back in practice by our own uncertainty in those

areas, and the timidity of her doctor who was afraid frankly of killing

her or doing permanent physical damage by provoking a bunch of

reactions. In fact towards the end there was a legitimate concern of

pushing her over the edge into suicide, rational or otherwise, due to

the intensity of the reactions plus the fact that the infections and

her reactions to various exposures were both screwing with her

neurotransmitters, which were oscillating all over the place and

plunging her in and out of profound depression, causing huge dopamine

fluxes, almost perpetual sweats, etc.

All that said, you're right -- however it comes about and whatever one

should do to address it, the derangement of the immune system is

profound. We focus, I think, too much on the immune system being

simply suppressed or impaired when in fact it is upregulated in some

areas and downregulated in others, and in still others it is

oscillating wildly between those two poles. It's a chaotic problem,

not a simple over or under sensitivity. It's as if the circuitry

cabinet in the sub-basement that controls all that stuff is shorting

out. It isn't a simple matter of adjusting a knob someplace, it's a

matter of needing to reboot the whole system (assuming it's even all

there to do its job).

My overwhelming impression during 's final two years was of an

immune system that had become largely erratic / intermittent other than

a couple of areas where it was pegged at the upper end of overactivity

(e.g., chemical sensitivities). My sense was that through some

combination of neurological damage / impairment, enzyme and hormone

derangement, toxins / general disruption from pathogens,and overall

body burden of toxins, the immune system was being progressively

compromised until she just basically drowned in the environment --

almost as if she was a space alien who could not survive in this

biosphere.

--Bob

Barb Peck wrote:

Just the opposite for me.. Lyme was the root cause of all my

sensitivites. The theory is (that I belive) is that in some people

chronically infected with Lyme - the immune system becomes hyper

sensitive to more and more things over time. Thus - My operating

system was getting narrower and narrower as my tolerance for things

became less and less, i.e. foods, drinks, sunlight, stress, sights

smells, chemicals... I wasn't at the point your wife was- but I was

headed that way. I had a really ahrd time with the abx- and pulsed it

by my OWN schedule- to the horror at the time of almost everyone in

the Lyme community.

Interesting that a bug can supress the immune system in some ways and

cause it to be hyper sensitive in others.

It was primarily Lyme in my case ( although I think over time I was I

was also infected with other opportunistic bugs that found me a good

host too - and I think they kept each other in check- I was their

little eco system).

I also think there's alot to the theory of aging and th "pathogen

burden" accumulation over ones life. Viruses reside with us pretty

much foreve- and I think bacteria do too (Penny will agree). And this

is one issue I agree with MP on- every few years it's probablt a good

idea to do 10 days ( or sequential therapy of a couple of drug

classes) of " therapuetic " abx.

I can tell you one thing though. I am so amazed that all my symptoms

are gone- and I was someone who was so chemical sensitive that my

metal fillings in my mouth were removed in the mid 80's before it was

vogue to do so. I could hardly come into contact with gasoline FUMES

much less the liguid if I got some on me- and my hands would swell -

and there were very few foods I COULD eat without reaction digestive

or otherwise) - forget the jewelery..I'll be amazed the rest of my

life actually.

In any case- you have my deepest sympathies about your wife.

I think it was immune impairment ( not necessarily suppression

problems- more like hyper vigilance) due to latent infection.

I've seen too many animals and humans now with sensitivies that go

away after the right abx... (my fiends daughters allergies went away

after 10 days on tetracycline).

Later,

B

> >

> > Bob:

> > Thanks for sharing the results with us.

> > Was she ever treated for Lyme?

> >

> > Lyme is ALWAYS neurological if infection goes beyonf a month.

That's

> > why if not caught upon initial presentation - I think it can

be

> > really devasating later on to the brain. I think they make a

bee-

line

> > for the brain.

> >

> > Barb

> >

> > --- In infections

> > <mailto:infections%40>,

Bob Grommes

> > <bob@> wrote in part:

> > If you look this up in the mainstream literature there are

three

> > organisms commonly suspected as causing "fibrosis of the

meninges":

> > tuberculosis, syphillis -- and good old Borrelia burgdorferi,

better

> > known as Lyme Disease. Guess which of the three I suspect?

Guess

> > which one had tested positive for?

> >

> >

>

[Guest guest]

Inability to handle die-off

is exactly right. Also, beyond a certain point, reactions to drugs in

general, including the preservatives, excipients, and fillers, and the

plastic tubing and bags often used to deliver IVs.

The doc you speak of was probably not within a 50 mile radius which was

the absolute maximum car ride she could tolerate. We searched high and

low for a local doc who could do IVs, finally found one this past

April, and I think he'd have done IV abx on a very conservative basis

similar to what you describe, but we tried preservative-free magnesium

sulfate first, using personal stock she was known to be tolerant to --

in order to get a sense of whether she could tolerate the IV process

itself or not. That proved not to be the case.

Plus, although the doc himself was pretty good, like a lot of docs he

didn't know how to manage staff effectively. His staff, including his

nurses, were only marginally competent. They'd come to work sick with

the flu, schedule non-MCS patients who reek of perfume into the IV room

at the same time as , did an indifferent job of monitoring flow

rates -- little things like that [sigh]. They were happy to

accommodate your requests but you had to think of everything yourself,

provide your own vigilance, and then there was always some last minute

change of plan that screwed everything up.

No, I can't convey how hideous and awful the whole thing was for her at

ground zero from about 2004 on. I don't know where she came up with

the strength to endure it. She was always tough as nails, and

tenacious as heck, but her life was such a joyless grind those last

three years. Yet she somehow didn't become bitter or lose her focus on

other people. I gotta tell you, after 14 years with her I still didn't

understand where the inner reserves came from. Maybe it was God's one

gift to her in all this.

--Bob

jill1313 wrote:

Its too bad she couldn't have seen someone like the doc who handled

ArtistDi, the MCS/lymie I know...he put her on the low dose steroids

for vasculitis and started out at 20 mg IV doxy, to avoid gut

problems. This pulled her back into the land of the living.

I also know of another doc--he may have stopped treating now--who puts

people on low dose IV, and I spoke with the husband of a woman, both

were RN's but she declined much like your wife and became bedridden

and suicidal. He put her on low dose (75 mg) IV rocephin. Normal dose

is 1-4 GRAMS. She improved and imrpoved. Had not tolerated other

protocols herbal or abx and had bad reactions.

His view is that such patients cannot handle a major kill and the

toxicity associated with it. For MCS/infected people, less is more.

I can't even handle abx as far as I'm concerned, but I notice with

other therapies and me, less is more too.

There can also be genetic componenets. My mother had horrible

fibrillations from anesthesia, and her mother had Parkinson's, and my

maternal aunt all kinds of weird problems, some neuro. There can be

innate glitches in the neuro-immune-endocrine system that

predispose

to sensitivity reactions esp. with chronic infection.

I feel badly for your wife--even though she's gone your description

sounds so terrible while she was alive. Donna Eden a healer describes

getting to a point of terrible MCS and moving herself and kids to a

very pure spot in Hawaii away from everything, no chemicals, pure

food, and slowly getting better.

> > > >

> > > > Bob:

> > > > Thanks for sharing the results with us.

> > > > Was she ever treated for Lyme?

> > > >

> > > > Lyme is ALWAYS neurological if infection goes

beyonf a month.

> > That's

> > > > why if not caught upon initial presentation - I

think it can be

> > > > really devasating later on to the brain. I think

they make a bee-

> > line

> > > > for the brain.

> > > >

> > > > Barb

> > > >

> > > > --- In infections

> > <mailto:infections%40>

> > > > <mailto:infections%40>,

Bob Grommes

> > > > <bob@> wrote in part:

> > > > If you look this up in the mainstream literature

there are three

> > > > organisms commonly suspected as causing "fibrosis

of the

> > meninges":

> > > > tuberculosis, syphillis -- and good old Borrelia

burgdorferi,

> > better

> > > > known as Lyme Disease. Guess which of the three I

suspect? Guess

> > > > which one had tested positive for?

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Some people react to plastic

tubing or, more commonly, the soft plastic bags that a lot of IVs are

dispensed in. Famously, when the IV drug for CFIDS/ME, Ampligen, was

undergoing clinical trials, the whole thing was buggered up because

plastic bags were used rather than glass bottles to mix this very

unstable substance -- contrary to detailed instructions provided by the

company that developed the drug.

Glass bottles are available for dispensing IV fluids and a few clinics

and hospitals have them on hand for use on request. I don't know for a

fact it was the cause of the problem but since I don't have reason to

believe she was infected and she was being infused with

preservative-free Mg Sulfate she had been using IM without difficulty, and

since she was ridiculously reactive to almost everything, that's the

theory I'll have to go with. The other thing that makes me lean that

way is that repeated IVs increase the chance of reacting to the

pthalates leaching out of the plastic, and she was fine the first

couple of times and got progressively worse after that.

The whole IV thing happened very late in the game, and we didn't have a

chance before she died to figure out what was causing the problem for

sure. Magnesium sulfate can burn veins if dispensed too quickly, and

in one instance there was some leakage at the puncture site that

complicated matters. It was like everything else, too many suspects.

Was it the maid, the butler, or ...?

Yes, we looked into a picc line, not only for general IV use but to get

her some better nutrition since she was having difficulty getting

enough via food. But those are fairly invasive procedures, would have

required an overnight hospital stay to install, we were told, and

complications with long term use including infection is fairly common,

especially in someone as ill as that. One has to have local anesthesia

and that is always dicey for the severely sensitive. One has to run a

needle into a major artery close to the heart, and she was having

tremendous discomfort in that area as it was, etc etc.

--Bob

jill1313 wrote:

Do you really think she was reacting to plastic tubing? It seems

unusual to me (not denying it).

Artist Di got a picc line--obviously couldn't have?--so she

could be infused at the hospital twice a week (20 mg IV doxy), or else

do her glutathione etc at home.

The other lady--the bedridden nurse--whose husband said she was slowly

dying--and last I heard took a trip to Florida for a week (they're in

Arizona I believe)--had a Groshong, I think?

That allows for infusing at home.

But your wife might have reacted to those.

Sounds like a typical holistic doc's office actually. I learned I have

to think for myself.

[Guest guest]

yeah, me too. I also agree with Barb that the allergic reactions and sensitivities most definitely seem to be a side effect of the infection and an overly sensitive immune system that starts trying to fight everything off, since nothing seems to be working on the infection itself. I've also had allergies go away when I start a good drug. But over time, I've also found myself more sensitive to things that never used to bother me. Especially worse now since having the stupid baloon sinuplasty. Now I can breathe in all kinds of crap which irritates my sinuses and causes violent sneezing (which I never experienced prior to surgery), but the crap in my sinuses still doesn't come out of my sinuses, so so much for fixing my "drainage problem" (as it was deemed by all the ENT "experts"). I feel like a lot of the things I experience now are a kind of over the

top allergic type reaction to minor irritants, not to mention the reactions to the inflammation. penny Barb Peck <egroups1bp@...> wrote: Bob:I think your diagnosis is spot on (to use Tony's phrase). Barb--- In infections , Bob Grommes <bob@...> wrote in part:My overwhelming impression during 's final two years was of

an immune system that had become largely erratic / intermittent other than a couple of areas where it was pegged at the upper end of overactivity (e.g., chemical sensitivities). My sense was that through some combination of neurological damage / impairment, enzyme and hormone derangement, toxins / general disruption from pathogens,and overall body burden of toxins, the immune system was being progressively compromised until she just basically drowned in the environment -- almost as if she was a space alien who could not survive in this biosphere.