RE: [SPAM]RE: [SPAM] Re: Inflammatory solutions to: Chronic illness, infection and inflammation, numerous diagnoses incl progressive MS, Lupus, Behcet's, MRSA, chronic staph, neurogenic bladder vs inflammatory bladder

[Guest guest]

Okay I understand. Also my upper endoscopy

done last week came back with moderate gastritis and moderate esophagitis but

no explanation of what is causing the inflammation itself. How else would I

know I had an actual infection in that case? They did biopsies in the upper GI

and colonoscopy…..all negative….In other news, having a feeding

tube put in on the 22nd as I continue to lose more and more weight.

Now 33 lbs below goal weight……at

98 lbs…..and to think at one point 8 years ago, I weighed in at 270

lbs!!!! OY…….

From: infections [mailto:infections ] On Behalf Of Penny Houle

Sent: Thursday, September 11, 2008

10:05 AM

infections

Subject: [sPAM]RE:

[sPAM][infections] Re: Inflammatory solutions to: Chronic

illness, infection and inflammation, numerous diagnoses incl progressive MS,

Lupus, Behcet's, MRSA, chronic staph, neurogenic bladder vs inflammatory

bladder

Unfortunately, the Great Smokies negative report

doesn't mean much. You could very easily have an infection not detected by

their methods.

--- On Thu, 9/11/08, Levitt <knightshotter >

wrote:

From: Levitt

<knightshotter >

Subject: RE: [sPAM][infections] Re: Inflammatory

solutions to: Chronic illness, infection and inflammation, numerous diagnoses

incl progressive MS, Lupus, Behcet's, MRSA, chronic staph, neurogenic bladder

vs inflammatory bladder

infections

Date: Thursday, September 11, 2008, 7:01 AM

The long term doxy didn¢t work and I don¢t tolerate much of

anything else, sometimes vancomycin via IV. The GI health panels from Smokies

have said no fungus, bacteria, etc in gut..I believe my problems started with

a flu virus that I never got over and other ailments and overtime, it became

systemic. I have no positive cultures or testing that says fungus anywhere. I

did get a mild esophagitis and mild gastritis + at the upper endoscopy this

past week while colonscopy is negative. I am getting a feeding tube on the 22nd

due to too much weight loss.

From: InfectionAndInflamm

ation2@grou ps.com [mailto:InfectionAn dInflammation2]

On Behalf Of Barb Peck

Sent: Wednesday, September 10,

2008 6:32 PM

InfectionAndInflamm

ation2@grou ps.com

Subject: [sPAM][infectionAnd

Inflammation2] Re: Inflammatory solutions to: Chronic illness, infection and

inflammation, numerous diagnoses incl progressive MS, Lupus, Behcet's, MRSA,

chronic staph, neurogenic bladder vs inflammatory bladder

Hi :

DO you think your peoblems stem from viral or funf=gal infections?

It seems that if it were bacterial the long term doxy would have

given you an improvement.

Barb

>

> I have been on this list at various times over the past five years

and

> recently rejoined the list after re-engaging with one of my e-mail

friends

> who was active on this list.

>

>

>

> I have very complicated circumstances which started with specific

infections

> probably as a child and repeated lung infections after I turned

18. Over

> the next 20 years my health was hard to say I typically have about

four long

> episodes of serious per year which often led to a pneumonia

diagnosis at

> times.

>

>

>

> Then my problems became more affecting autoimmune type symptoms and

> inflammation in many many many areas of my body. With many disease

naming

> ceremonies from well-meaning and not well-meaning doctors I have

been

> diagnosed with chronic relapsing MS, possible lupus but don't

consistently

> meet criteria,

>

> Behcet's (an inflammatory autoimmune disorder), endless

inflammation in

> mouth and throat stomach and apthous ulcers which culture negative

to

> everything.

>

>

>

> The current medical protocol for me by my doctors has me taking

more than 18

> different drugs most of which are intended to reduce spasticity

reduce

> inflammation, myalgia, and more specific symptoms and body parts

again to

> reduce inflammation or two relax or reduce spasticity. The effect

has been

> that I believe I am very oversedated at times but that is another

story.

>

>

>

> I have enormous allergies most anaphylactic covering the antibiotic

world.

> These would include things like penicillin sulfa quinolones

tetracycline

> erythromycin. At very rare times I am able to tolerate oral doses of

> doxycycline and in fact did a pulsed schedule of doxycycline for

about nine

> months about three years ago. I don't tolerate that medicine very

well at

> all now. Pretty much my only option is vancomycin IV through my

port a

> catheter. I have not needed this level of antibiotic therapy for

about three

> years.

>

>

>

> I believe that my real problems are chronic encephalopathy or

encephalitis

> related perhaps to specific infections perhaps even minor ones that

> occurred in younger years. While my spinal fluid has been tested I

have not

> received specific tests that I think would be more appropriate to

rule out

> continued and chronic damage to the brain rather than simply

assuming that

> it is continued progression of my MS which does not match my MRIs.

>

>

>

> It was suggested that one of the antifungals that I should try is

that

> Lamisil which I have here. I have not been successful getting the

most other

> antifungals in the past although I did have nystatin on hand about

six

> months ago.

>

>

>

> I have so many specialists that they all confuse each other and

seemed to be

> mostly unaware of my desperate health problems. I have become my

own case

> manager and asked my brain dysfunction and memory and other loss of

function

> and facial strength and so on is making this much more difficult.\

>

>

>

> My questions would be what do you think the role of AFS to treat

> inflammation chronically attributed to MS and these other autoimmune

> diagnosis. In the early year if I was sent to infectious disease

doctors in

> order to culture my ulcers and determined that they did not culture

out into

> anything at which point they did not see a reason to see me. Also

is it

> actually possible that the real problem is that one of many

infection or

> problems related to one of my illnesses caused the start of more

> inflammatory problems. How do I address any need to take long-term

or a

> pulsed schedule antibiotics taste on my extensive anaphylactic

reactions.

>

>

>

> I will answer more questions off list but I just wanted to get this

topic

> started think you

>

>

>

> in NC

>