Re: Inflammatory solutions to: Chronic illness, infection and inflammation, nume

[Guest guest]

Hi ,

You mentioned culturing negative for aphthous ulcers. Does that

include HHV-7? Dr. Kenny De Meirleir in Belgium last year told me that

he has established that aphthous ulcers are caused by HHV-7. He says

100% of ulcer biopsies are positive; 0% of controls are positive.

Tim

>

> 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

>

[Guest guest]

> 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.

I doubt that doxy is often a winner by itself. What about this'n,

which we've seen before -- doxy was ineffective, doxy plus rifampin

was effective, in axial arthritis. Granted, this is a phase II size

investigation; all medical semi-DIYers should know that phase II

studies have rather limited reproducibility -- they are rather often

contradicted by later work from other groups.

JD, Valeriano J, Vasey FB.

Doxycycline versus doxycycline and rifampin in undifferentiated

spondyloarthropathy, with special reference to chlamydia-induced

arthritis. A prospective, randomized 9-month comparison.

J Rheumatol. 2004 Oct;31(10):1973-80.

PMID: 15468362

" The mean VAS (scale of 100) decreased 24.4 points in D/R in contrast

to 3 points in D (p < 0.03). [...] Eleven of 15 patients in the D/R

arm were responders, whereas only 2 of 15 D group patients were

considered responders (p < 0.003) "