New fatigue-syndrome clue found.

[SWAlexander]

New fatigue-syndrome clue found.
The Sacramento Bee, 15th January 1992.

I was first time diagnosed in 1992, in Sacramento CA.
No other doctor wanted to know or confirm it, despite CSF leak fluid through the ears.
It was dismissed as "just an allergy".

 

[Rufous McKinney]

My diagnosis was: impossible Mononucleosus

they said in 1966, it was impossible to get mononucleosis again. so my repeated bouts were dcescrtibed in the 1960s as Impossible.

 

[SWAlexander]

it was impossible to get mononucleosis again

What have they done to us? When ignorance triumphs, people suffer.

 

[sunshine44]

My diagnosis was: impossible Mononucleosus

they said in 1966, it was impossible to get mononucleosis again. so my repeated bouts were dcescrtibed in the 1960s as Impossible.

same rufous. I had two confirmed cases of mono, once when 2 and once when 17...yet impossible i'm told. Whats impossible is the massive denial of freaking facts by so many.

 

[sunshine44]

New fatigue-syndrome clue found.
The Sacramento Bee, 15th January 1992.
View attachment 47896

I was first time diagnosed in 1992, in Sacramento CA.
No other doctor wanted to know or confirm it, despite CSF leak fluid through the ears.
It was dismissed as "just an allergy".

i cannot comprehend why this isn't yet well known science yet.
1992?
I have so many signs of brain inflammation and csf leaks....but no proper testing was ever performed because even though i lost ability to walk, i was deemed stressed, had a baby and husband said i hadn't slept well in a few years, Dr's easily fed into the hysteria route even though i literally lost the ability to walk. One Dr upon seeing my gait disturbance asked if i had been stressed recently. Precious minutes were wasted. Minutes where treatments could have been tried. I am so angry with the system that never tried for me.

 

[SWAlexander]

I am so angry with the system that never tried for me.

Yes sunshine44, so am I.
One neurologist (end of August 1992) at Kaiser Permanente sends me to have an MRI with contrast. He suspected at the time that some virus or injury has caused CSF. At my next appointment, he found out that the MRI was without contrast. He was enraged and confronted the department.
At my next appointment, another neurologist explained that the previous doctor is no longer working for Kaiser and "MRI with contrast is not necessary". He sent me to psychotherapy and I was put on Wellbutrin. I found out that HMOs try to save money.
The sad part is, that even today doctors refuse to believe CSF (and leaks) is a big part of ME/CFS induced by virus or injury.
The problem with CSF is, that most of the time fluid behind the ear drum (also dripping down the eustachian tube), can only be detected when symptoms of brain swelling are acute.
Anytime I mentioned CSF somewhere I am corrected by professionals and by others.
I´m suffering all my life and I never know how it feels to be healthy.

 

[SWAlexander]

it was impossible to get

65 years ago they also said, herpes is not so bad. Kids have it all the time. It will go away without any problems.

 

[Marylib]

Maybe the fact that people are getting covid over and over again will change some thinking?

 

[CSMLSM]

same rufous. I had two confirmed cases of mono, once when 2 and once when 17...yet impossible i'm told. Whats impossible is the massive denial of freaking facts by so many.

Hi sunshine44,
I myself have recently learned from my mother that I suffered what is called Croup here in the UK at two years of age. I knew I had Croup when I was five because I remember being in the oxygen tent and the inability to breath in the back seat of the taxi before being driven to the hospital. Apparently I had Croup many times between two and five.

Croup is caused by EBV/Mono. I also spent most of my life up until starting to consume cannabis with constantly inflamed sinuses. I usually only had one nostril I could breath through and other times barely any air flow through my sinuses. I also had prolonged Tonsillitis in my teens (school) having to wait a long time to have removed because infection would not resolve. Tonsillitis is also caused by EBV/Mono.

I can see that a susceptibility/weakness to EBV in our immune systems could well be why we develope this cruel condition. EBV is in most people kept under control but a polymorphism in one receptor responsible for even just a tiny part of the complex process could be why we are prone.

 

[CSMLSM]

Hi sunshine44,
I myself have recently learned from my mother that I suffered what is called Croup here in the UK at two years of age. I knew I had Croup when I was five because I remember being in the oxygen tent and the inability to breath in the back seat of the taxi before being driven to the hospital. Apparently I had Croup many times between two and five.

Croup is caused by EBV/Mono. I also spent most of my life up until starting to consume cannabis with constantly inflamed sinuses. I usually only had one nostril I could breath through and other times barely any air flow through my sinuses. I also had prolonged Tonsillitis in my teens (school) having to wait a long time to have removed because infection would not resolve. Tonsillitis is also caused by EBV/Mono.

I can see that a susceptibility/weakness to EBV in our immune systems could well be why we develope this cruel condition. EBV is in most people kept under control but a polymorphism in one receptor responsible for even just a tiny part of the complex process could be why we are prone.

I just want to correct EBV does not cause croup I had confused memory from some research into possible cause and found a link to another Herpies virus. Sorry for mistake was while ill and has no baring on the rest of my research/treatment.
EBV is HHV-4 and prolonged croup can be caused by HHV-1 which is HSV-1.
Herpes simplex virus infection. A rare cause of prolonged croup - PubMed (nih.gov)
Abstract
Pediatric acute subglottic croup is generally of limited duration (usually 2 to 7 days) and caused by influenza or parainfluenza viruses. Prolonged infections may involve other pathogens. To date and to our knowledge, there has been but a single case report of herpes simplex virus type 1 (HSV-1) infection prolonging croup attributed to prolonged use of corticosteroids. Other authors have reported a wide range of HSV-1 infections of the upper and lower respiratory tracts in all age groups that are usually associated with immunocompromise. Two immunocompetent toddlers with prolonged croup associated with HSV-1-positive subglottic lesions are described herein. In one case the culture was obtained 11 days after just three doses of dexamethasone treatment. In the second case the culture was obtained after 10 days of prednisone therapy; the infection cleared quickly following treatment with acyclovir and rapid taper of the prednisone dose. These cases suggest that prolonged croup-like symptoms warrant thorough airway evaluation. Herpes simplex virus type 1 should be a suspected pathogen in cases of prolonged or atypical croup. Herpes simplex virus type 1 croup is not necessarily associated with immunocompromise or prolonged corticosteroid therapy. Acyclovir seems to be effective in treating other airway HSV infections, and by analogy it is the treatment of choice in recalcitrant herpetic croup. It is unknown whether HSV-1 represents a primary or secondary pathogen in prolonged croup.