Re: Autopsy results

[Guest guest]

I also heard it was the wrong form of EDTA used ...

s

persistentC@...

President and Executive Director

The Mariposa School

for Children with Autism

203 Gregson Drive

Cary, NC 27511

919-461-0600

www.MariposaSchool.org

"Most of the important things in all the world have been accomplished by people who kept on trying when there seemed to be no hope at all." Dale Carnegie

From: EOHarm [mailto:EOHarm ] On Behalf Of Sent: Friday, January 06, 2006 4:09 PMEOHarm Subject: autopsy results

This autopsy report does not really clarify the reason the child died. Yes, the child had EDTA in his system, and yes he died, and yes, they are probably related, but the info is still incomplete, and no autopsy will reveal the exact mechanism. As best as I can tell, he had an idiosyncratic reaction to the EDTA, but we don't know if it was an allergy, like anaphylaxis, or if he had a cardiac arrhythmia, or what. I have read lots of obviously incorrect info on this topic, like the child died of a "heart attack." I wish more info about the clinical scenario in the office was available, like exactly what he received, how much and how fast, how he was treated when he started to have complications, etc., but I guess this info will never be available.It kinda reminds me about how Terry Schiavo's autopsy report "proved" she was blind and could never have seen the dangling balloons, like her parents said she did. Well, you cannot determine function from a microscopic exam of tissue. Of course she was severely brain damaged, including being visually impaired, but to say the microscope "proved" she had no ability to see at all is ludicrous. Naturally, all the parents on this list have heard hyperbolic overstatement on the topic of autism, so I'm sure they saw parallels with the politization (sp?) of the Schiavo case.I think it is correct that the autopsy classified as accidental. Unfortunately, bad things happen to patients all the time, even though they were treated with the best of intentions. Vaccines were obviously created with good intentions as well."One special advantage of the skeptical attitude of mind is that a man is never vexed to find that after all he has been in the wrong."Osler

[Guest guest]

Wow, Bob. Thank you. Major kudos to you for having the autopsy done and for sharing that information. We need more people to follow your lead. Mycobacteria and mycoplasma are the same, as I understand them, and they can be caused by any bacteria (not limited to just a few species) that progress through various developmental stages. I think this is really revealing. Now if we could just get the right people to take note. If I were you, I'd also send copies to the CDC and any research or advocacy organizations who are interested in chronic illness, infection or inflammation. Thanks again for doing this and sharing the results. Hopefully your wife's suffering will not have been totally in vain. Wishing you a more peaceful and stress free life in the new year. penny Bob Grommes <bob@...> wrote: Folks,I got 's autopsy results finally. I was interested to see what a routine forensic autopsy would or would not notice given that they weren't looking for anything in particular. I think that enough evidence of chronic inflammation was noted that it's very significant, although of course, they did not know what to make of it and the cause of death was "autopsy negative sudden death" which I believe we used to just call "unknown

causes".Probably the biggest finding was this:"The leptomininges [of the brain] are white and opaque in some areas, probably representing fibrosis." (later, in the microscopic examination):"There is dense fibrosis of the meninges." (or in other words, widespread inflammation).This is consistent with her primary symptoms, which were neurological: brain fog, problems locating appropriate nouns for objects, profound balance disturbances, walking into things, etc., as well as more broadly, severe dysautonomia. 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?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? She certainly tested positive for those, especially Mycoplasma Hominis.Apart from that there was some inflammation in the heart and kidneys at the cellular level, a half-inch gall stone, a flock of fibroids up to 3/4 inch in size, and several other findings that are directly or indirectly inflammation-related.None of this is a surprise to me but it is a little validating that the uncaring wider world is able to glimpse a little of 's reality. In the last 2 or 3 years, it was basically "all inflammation, all the time". Another inflammation-related finding was in the lungs (again at the microscopic level):"There is marked irregular enlargement of the alveolar spaces and some of the alveolar septa are thickened by fibrosis". was not experiencing any congestion or overt respiratory symptoms

in her final weeks, although she was used to a substantial background noise of pain and discomfort that she did not really bother to talk about. The point is, something nasty was going on in her lungs that was not causing overt, acute symptoms.Anyway ... for what it's worth. I'm passing the full report to 's doctor for his continued research and information sharing with colleagues.--Bob

[Guest guest]

I did not order the autopsy,

it was done by the medical examiner because she died at home. They

were obsessed with inventorying her drugs and supplements and running

toxicology tests out to three different labs to make sure I didn't drug

or poison her. Not that I was overtly under suspicion, it's just that

when someone dies for unexplained reasons at home they are obliged to

rule out foul play before closing the case. (If you ask me they should

not assume that deaths in hospitals aren't because of foul play of

sorts, but I digress).

That's why I think the inflammation findings were particularly

noteworthy. It wasn't what they were focusing on but they found it

anyway. Although, tellingly, they still ended up with a confused shrug

about it.

--Bob

Penny Houle wrote:

Wow, Bob. Thank you. Major kudos to you for having the autopsy

done and for sharing that information. We need more people to follow

your lead.

Mycobacteria and mycoplasma are the same, as I understand them,

and they can be caused by any bacteria (not limited to just a few

species) that progress through various developmental stages.

I think this is really revealing. Now if we could just get the

right people to take note.

If I were you, I'd also send copies to the CDC and any research

or advocacy organizations who are interested in chronic illness,

infection or inflammation.

Thanks again for doing this and sharing the results. Hopefully

your wife's suffering will not have been totally in vain.

Wishing you a more peaceful and stress free life in the new year.

& nb sp;

penny

Bob Grommes <bobbobgrommes> wrote:

Folks,

I got 's autopsy results finally. I was interested to see what a

routine forensic autopsy would or would not notice given that they

weren't looking for anything in particular. I think that enough

evidence of chronic inflammation was noted that it's very significant,

although of course, they did not know what to make of it and the cause

of death was "autopsy negative sudden death" which I believe we used to

just call "unknown causes".

Probably the biggest finding was this:

"The leptomininges [of the brain] are white and opaque in some areas,

probably representing fibrosis."

(later, in the microscopic examination):

"There is dense fibrosis of the meninges." (or in other words,

widespread inflammation).

This is consistent with her primary symptoms, which were neurological:

brain fog, problems locating appropriate nouns for objects, profound

balance disturbances, walking into things, etc., as well as more

broadly, severe dysautonomia.

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?

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? She certainly tested

positive for those, especially Mycoplasma Hominis.

Apart from that there was some inflammation in the heart and kidneys at

the cellular level, a half-inch gall stone, a flock of fibroids up to

3/4 inch in size, and several other findings that are directly or

indirectly inflammation-related.

None of this is a surprise to me but it is a little validating that the

uncaring wider world is able to glimpse a little of 's reality.

In the last 2 or 3 years, it was basically "all inflammation, all the

time".

Another inflammation-related finding was in the lungs (again at

the microscopic level):

"There is marked irregular enlargement of the alveolar spaces and some

of the alveolar septa are thickened by fibrosis".

was not experiencing any congestion or overt respiratory symptoms

in her final weeks, although she was used to a substantial background

noise of pain and discomfort that she did not really bother to talk

about. The point is, something nasty was going on in her lungs that

was not causing overt, acute symptoms.

Anyway ... for what it's worth. I'm passing the full report to 's

doctor for his continued research and information sharing with

colleagues.

--Bob

[Guest guest]

Oh geez. Spend more time finding investigating foul play rather than investigating the illness before her death. That must have been distressing. I'm glad you got the results though. I strongly encourage all of us to make provisions for autopsies to be performed when we die. It might help future generations. penny Bob Grommes <bob@...> wrote: I did not order the autopsy, it was done by the medical

examiner because she died at home. They were obsessed with inventorying her drugs and supplements and running toxicology tests out to three different labs to make sure I didn't drug or poison her. Not that I was overtly under suspicion, it's just that when someone dies for unexplained reasons at home they are obliged to rule out foul play before closing the case. (If you ask me they should not assume that deaths in hospitals aren't because of foul play of sorts, but I digress).That's why I think the inflammation findings were particularly noteworthy. It wasn't what they were focusing on but they found it anyway. Although, tellingly, they still ended up with a confused shrug about it.--BobPenny Houle wrote: Wow, Bob. Thank you. Major kudos to you for having the autopsy done and for sharing that information. We

need more people to follow your lead. Mycobacteria and mycoplasma are the same, as I understand them, and they can be caused by any bacteria (not limited to just a few species) that progress through various developmental stages. I think this is really revealing. Now if we could just get the right people to take note. If I were you, I'd also send copies to the CDC and any research or advocacy organizations who are interested in chronic illness, infection or inflammation. Thanks again for doing this and sharing the results. Hopefully your wife's suffering will not have been totally in vain. Wishing you a more peaceful and stress free life in the new year. & nb sp; penny Bob Grommes <bobbobgrommes>

wrote: Folks,I got 's autopsy results finally. I was interested to see what a routine forensic autopsy would or would not notice given that they weren't looking for anything in particular. I think that enough evidence of chronic inflammation was noted that it's very significant, although of course, they did not know what to make of it and the cause of death was "autopsy negative sudden death" which I believe we used to just call "unknown causes".Probably the biggest finding was this:"The leptomininges [of the brain] are white and opaque in some areas, probably representing fibrosis." (later, in the microscopic examination):"There is dense fibrosis of the meninges." (or in other words, widespread inflammation).This is consistent with her primary symptoms, which were neurological: brain fog,

problems locating appropriate nouns for objects, profound balance disturbances, walking into things, etc., as well as more broadly, severe dysautonomia. 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?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? She certainly tested positive for those, especially Mycoplasma Hominis.Apart from that there was some inflammation in the heart and kidneys at the cellular level, a half-inch gall stone, a flock of fibroids up to 3/4 inch in size, and several other findings that are directly or indirectly

inflammation-related.None of this is a surprise to me but it is a little validating that the uncaring wider world is able to glimpse a little of 's reality. In the last 2 or 3 years, it was basically "all inflammation, all the time". Another inflammation-related finding was in the lungs (again at the microscopic level):"There is marked irregular enlargement of the alveolar spaces and some of the alveolar septa are thickened by fibrosis". was not experiencing any congestion or overt respiratory symptoms in her final weeks, although she was used to a substantial background noise of pain and discomfort that she did not really bother to talk about. The point is, something nasty was going on in her lungs that was not causing overt, acute symptoms.Anyway ... for what it's worth. I'm passing the full report to 's doctor for his continued research and information sharing with

colleagues.--Bob

[Guest guest]

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]

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.

> >

> >

> > 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]

Speaking of lungs, I meant to add - one paper I've read (probably

Stanford and Rook) mentioned that lung tissues (or was it lung

lavages?) are sharply abnormal in RA. This despite the lack of lung

disease being a significant problem in RA to my knowledge.

So Crohn's and UC aren't the only disease in which there are routine

lesions outside the " classical " disease locus. That's not really news

to long-term readers here - but the fact that such abnormilities can

be subclinical might be somewhat novel. Relatedly, I've heard it said

by a pathology professor (who is not always 100% correct) that as a

rule of thumb, most organs can look pretty bad on exam without

actually losing any function - whereas the brain is the noteworthy

exception and is quite the reverse, able to be severely disordered in

the absence of clear exam findings (eg schizophrenia, narcolepsy,

etc). I'm not sure what the case would be with the meninges; clearly

they are not brain tissue proper, but meningitis of many different

etiologies causes and/or is associated with brain dysfunction,

needless to say.

> 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

[Guest guest]

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.

> 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]

If anyone is suspect of TB it's a reportable condition.

It takes on emergency scenario's and everyone in contact has to be

screened....so that one is a no way..On the other hand I sent

erikmol warrior an email the other day stressing that his incline

ilness was breathed in so if I got a sample from his and someone else

from incline.. I could possably sub classify to the exact same

species- of there respiratory bugs.

>

>

> Speaking of lungs, I meant to add - one paper I've read (probably

> Stanford and Rook) mentioned that lung tissues (or was it lung

> lavages?) are sharply abnormal in RA. This despite the lack of lung

> disease being a significant problem in RA to my knowledge.

>

> So Crohn's and UC aren't the only disease in which there are

routine

> lesions outside the " classical " disease locus. That's not really

news

> to long-term readers here - but the fact that such abnormilities

can

> be subclinical might be somewhat novel. Relatedly, I've heard it

said

> by a pathology professor (who is not always 100% correct) that as a

> rule of thumb, most organs can look pretty bad on exam without

> actually losing any function - whereas the brain is the noteworthy

> exception and is quite the reverse, able to be severely disordered

in

> the absence of clear exam findings (eg schizophrenia, narcolepsy,

> etc). I'm not sure what the case would be with the meninges;

clearly

> they are not brain tissue proper, but meningitis of many different

> etiologies causes and/or is associated with brain dysfunction,

> needless to say.

>

>

> > 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

>

[Guest guest]

Hi Bob, I'm sure these holidays have been a painful time for you...

Less is more with chemically sensitive lymies/cfs-ers whatever they

are. That's what I discovered for me anyway. That is...except for

chocolate !

I think its good to be somewhat chemically sensitive. These chemicals

are poisons and responsible for a lot of damage to a lot of people.

Being somewhat sensitive forces you to reduce their presence.

I do agree fabric softener is noxious. I use the washers in our

building but air dry my clothes. All the dryers use the same venting

system so if one has fabric softener it gets into all the others for

the whole day. I worry most about vulnerable little kids wearing

clothes with fabric softener and pajamas and sheets. I subscribe to

the free newsletter " Above the Fold " , I think its put out by the

foundation started up related to ourstolenfuture.org. Every day there

are links to articles about chemicals and toxins in our environment.

There are cancer clusters where industry was. All kinds of stories you

don't normally see. I just read this morning about how the UK let the

ORGANIC potato farmers use copper sulphate which is more toxic than

normal fungidicdes because they were having potato blight. I can't

tell you how much I've learned in the past year about how even organic

food is basically a big lie. Chickens are fed the wrong diet of corn

and soy, then even natural chicken that isn't given hormones and

antibioics, is cleaned in chlorine and then pumped up with sodium

phosphate to give the appearance of plumpness and add 15% water weight

along with excess sodium that those on low sodium diets have no idea

about (think they're eating healthy). Olive oil companies make more

money than cocaine traffickers according to the New Yorker but cutting

their olive oil with unhealthy oils that are cheap and then adding in

chlorophyll to give the characteristic green color of true olive oil

(that would indicate healthy flavanoids). My healthy canned tart

cherries are in cans with a nice white lining--that's bisphenyl A and

its an estrogen and can promote cancer. That's also in baby formula

cans and polycarbonate baby bottles. Its a travesty all around, this

is a messed up world.

-- In infections , Bob Grommes <bob@...>

wrote:

>

> 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]

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]

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]

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]

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.

-- In infections , Bob Grommes <bob@...>

wrote:

>

> 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>

> > > > > > <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]

She might've reacted to magnesium sulfate. If you look at Amy Yasko's

work, sulphur is a problem in many people who don't detox properly. I

handle magnesium chloride in my IV better and it's weaker. Magnesium

sulfate is rather strong, its 50% and the chloride 20% (for IV or IM

infusion). Just a thought but sort of a belated one.

I'm writing about plastics right now. Phthalates can be a problem in

terms of endocrine disruption over the long term esp. in fetuses and

the young, but I haven't seen any literature (doesn't mean it isn't

the case, of course) on allergic type reactions to it. Again I could

be wrong.

Yes you're right those insertion lines sound scary, I certainly would

rather get stuck once or twice a week myself. ArtistDi did have a

problem with insertion of her most recent one. My old hyperbaric doc

has a picc line at home and it's fine, never got infection. She says

they are very clean and she's very careful and I know this from how

she ran the clinic--super careful in ways most clinics aren't. So, I

suspect that some of the infections in picc lines are from inadequate

training in aseptic technique and managing the line. A brief training

to a regular individual who then infuses at home...they are likely to

get infected at some point.

Anyway...it's a new year...2008...we can only try to move forwards...I

know I have many regrets but when I ruminate too much it doesn't get

me too far...

> >

> > 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]

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.