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]

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