Guest guest Posted September 10, 2008 Report Share Posted September 10, 2008 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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