Post by gazz on Apr 9, 2007 7:39:36 GMT -5
Hi all, Gazz here - a UK Member
I've definately had Morg's since 1995. That was when the white blotchy rashs first appeared all over my face - with a preference within my 'beard area' (folliculitis according to the doc at the time)
Since then I've worked through all the classic signs of skin lesions/fibres/CFS/depression/sleep pattern disorder, but also, some significant other features I don't think I've seen mentioned here yet.
IMHO, I think there is some definate kind of relationship with Blood, Antibiotics and Kidney function.
I have had several occasions now when I have been subjected to a course of strong antibiotics - Amoxycillin and Cyproxin.
Not the more 'usual' course of tablets, but instead rather large doses, morning and evening, in mixes with water.
On these occasions, the infection that was being treated (usually middle ear) was healed almost immediately, but then I would get an outbreak of skin lesions all over - buttocks being a favourite - with the accompanying red/blue fibres. These would take up to six months to die down leaving purple scarred sites.
Observation #01 - On one occasion, in the middle of the last lesion outbreak, this also coincided with an appointment for minor surgery to remove an old site that had waxed and waned for the last 4 years.
This lump was excised along with a sizeable good chunk of surrounding material with it - ie the 'site' should now be sterile??
The histology came back and indicated no problems found, just a thickening where 'I must have been picking at it'
Meanwhile, I was keen to supervise & examine the site healing process. I noticed that the fibres were appearing in the scabs in the last stages of healing. This is with only sterile (white) lint dressings being applied.
Pictures were taken of samples using a digital microscope confirming this. ( I must have over 1,000 now)
My Conclusion(#1): The 'agent' causing the fibres is/can be blood borne and can appear at 'sterile' sites especially if it is affected (annoyed & threatened) by the presecence of strong antibiotics.
Observation #2: At the most intense point of the last lesion outbreak, I felt terrible and could hardly get out of bed. In particular my back felt as if someone had kicked me high in the kidneys - near the adrenals.
As one of my other 'classic symptoms' is being 'diabetic' (or should I more correctly say 'Syndrome X' which also includes High Tryglycerides, Cholesterol, BP) - I was using a pot to monitor my urine.
Imagine my surprise one day when a clump of fibres appeared in the pot !! Then 03 days later, another clump. In between times singleton blue or red fibres were also apparent.
My doc had me checked out including a kidney specialist who gave me a clean bill of health. (Although I only had the ultrasound scan - downgraded from the CT scan I was promised)
My Conclusion #2: The 'agent' causing the fibres can eject itself from the body using the kidneys - if threatened or needs to propagate.
Although most of what I have described has happened in only the last six months. My opinions/conclusions have mainly been based from the longer & more strategic view.
My health status has gone up and down over the last 12 years and trying to get past the '1st & 2nd lines' of medical help is still proving to be an issue. However, as this wave seems to be starting to 'hit the beach' I'm hoping we will soon get 'recognition' & a cure soon.
I have got more input, but I thinks thats quite enough for the introduction eh ?
Gazz
I've definately had Morg's since 1995. That was when the white blotchy rashs first appeared all over my face - with a preference within my 'beard area' (folliculitis according to the doc at the time)
Since then I've worked through all the classic signs of skin lesions/fibres/CFS/depression/sleep pattern disorder, but also, some significant other features I don't think I've seen mentioned here yet.
IMHO, I think there is some definate kind of relationship with Blood, Antibiotics and Kidney function.
I have had several occasions now when I have been subjected to a course of strong antibiotics - Amoxycillin and Cyproxin.
Not the more 'usual' course of tablets, but instead rather large doses, morning and evening, in mixes with water.
On these occasions, the infection that was being treated (usually middle ear) was healed almost immediately, but then I would get an outbreak of skin lesions all over - buttocks being a favourite - with the accompanying red/blue fibres. These would take up to six months to die down leaving purple scarred sites.
Observation #01 - On one occasion, in the middle of the last lesion outbreak, this also coincided with an appointment for minor surgery to remove an old site that had waxed and waned for the last 4 years.
This lump was excised along with a sizeable good chunk of surrounding material with it - ie the 'site' should now be sterile??
The histology came back and indicated no problems found, just a thickening where 'I must have been picking at it'
Meanwhile, I was keen to supervise & examine the site healing process. I noticed that the fibres were appearing in the scabs in the last stages of healing. This is with only sterile (white) lint dressings being applied.
Pictures were taken of samples using a digital microscope confirming this. ( I must have over 1,000 now)
My Conclusion(#1): The 'agent' causing the fibres is/can be blood borne and can appear at 'sterile' sites especially if it is affected (annoyed & threatened) by the presecence of strong antibiotics.
Observation #2: At the most intense point of the last lesion outbreak, I felt terrible and could hardly get out of bed. In particular my back felt as if someone had kicked me high in the kidneys - near the adrenals.
As one of my other 'classic symptoms' is being 'diabetic' (or should I more correctly say 'Syndrome X' which also includes High Tryglycerides, Cholesterol, BP) - I was using a pot to monitor my urine.
Imagine my surprise one day when a clump of fibres appeared in the pot !! Then 03 days later, another clump. In between times singleton blue or red fibres were also apparent.
My doc had me checked out including a kidney specialist who gave me a clean bill of health. (Although I only had the ultrasound scan - downgraded from the CT scan I was promised)
My Conclusion #2: The 'agent' causing the fibres can eject itself from the body using the kidneys - if threatened or needs to propagate.
Although most of what I have described has happened in only the last six months. My opinions/conclusions have mainly been based from the longer & more strategic view.
My health status has gone up and down over the last 12 years and trying to get past the '1st & 2nd lines' of medical help is still proving to be an issue. However, as this wave seems to be starting to 'hit the beach' I'm hoping we will soon get 'recognition' & a cure soon.
I have got more input, but I thinks thats quite enough for the introduction eh ?
Gazz