Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 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: infections [mailto:infections ] On Behalf Of Barb Peck Sent: Wednesday, September 10, 2008 6:32 PM infections Subject: [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 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2008 Report Share Posted September 11, 2008 Unfortunately, the Great Smokies negative report doesn't mean much. You could very easily have an infection not detected by their methods. 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 bladderinfections 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 PeckSent: Wednesday, September 10, 2008 6:32 PMInfectionAndInflamm ation2@grou ps.comSubject: [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> Quote Link to comment Share on other sites More sharing options...
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