PEM "neuro" flare, others ever experience similar?

[jenny39]

I have had my B12 checked a few times and it's always normal.

My only abnormal test results thus far are very low NK Cell function of 4 (typical of ME/CFS but not specific for it).

Also a slightly low Complement C4, and a very low Complement C3 which is not associated with ME/CFS (*not talking about C3a & C4a). In regards to the low Complement C3 I have been referred to an Immunologist in order to determine whether the low C3 is due to a genetic defect (rare) or is an acquired deficiency. I saw the rheumatologist last week about the low C3, but she still isn't seeing anything in my labs that indicates an autoimmune disease is present. The low C3 could potentially explain why I have had so many serious bacterial infections over the past 3 and a half year though (mystery intestinal infection, staph in surgical site, pseudomonas, severe c. difficle colitis. Inborn complement deficiencies are rare so I am eager to figure out what is causing it.

My ceruloplasmin is always below normal range and my copper was found to be below normal range 6 months ago, and most recently at low end of normal even though I eat plenty of copper rich foods and have none of the known risk factors for copper deficiency. Possibility of a genetic copper disorder such as Wilson's Disease was ruled out. It was only discovered recently that low copper causes neurological damage, but I think my copper would likely need to be really low to cause that? My most recent tests done last month equate to me having a Free copper of 33 which is high, but I'm not sure how legit calculating free copper is?

I just see you had a pseudomonas infection, I am currently being treated for pseudomonas aeruginosa diagnosed by an ear swab. My blood results have only ever shown elevated mcv and mch. The pseudomonas has been treated by about 14 weeks of ciprofloxacin and gentamicin. I have neurological symptoms and could feel my brain inflamed throughout and severe nerve pain all over. My b12 has also been deficient but I had to get my active levels tested before I was given any treatment. My neurologist has admitted that this is what caused the neurological problems. I picked up pseudomonas when I had appendicitis and complications 18 years ago. The treatment never got rid of it and the hospital never admitted to what I had picked up. I was given an ME diagnosis for 8 years before I found out I had this 2.5 years ago. I also have epilepsy so getting diagnosis was difficult as I had neurological symptoms that were put down to previous surgery.

 

[JaimeS]

.....everything is on PR.

Everything.

Night before last, I had dimming of the vision in my right eye with a blown pupil on that side. For a few minutes it returned to normal, and then it did a creepy dance, where it would blow and contract, trembling. Absolutely horrifying. Not sure how to describe, but the eye itself felt 'funny'. Maybe slightly numb?

When things were quite bad, I had Bell's symptoms: slumping of one side of the face, particularly around the orbit. Basically painted my right eyebrow a little higher for balance.

It happened when I took the wrong probiotic. Last night, I accidentally consumed some fermented food (traditional Japanese cooking). I guess that's why it happened.

I suppose there's something pressing on the ocular nerves?

Oi.

 

[TrixieStix]

.....everything is on PR.

Everything.

Night before last, I had dimming of the vision in my right eye with a blown pupil on that side. For a few minutes it returned to normal, and then it did a creepy dance, where it would blow and contract, trembling. Absolutely horrifying. Not sure how to describe, but the eye itself felt 'funny'. Maybe slightly numb?

When things were quite bad, I had Bell's symptoms: slumping of one side of the face, particularly around the orbit. Basically painted my right eyebrow a little higher for balance.

It happened when I took the wrong probiotic. Last night, I accidentally consumed some fermented food (traditional Japanese cooking). I guess that's why it happened.

I suppose there's something pressing on the ocular nerves?

Oi.

That does sounds scary re: your pupil.

Hmm yeah doctors told me my facial palsy was not Bell's palsy because it only affected the lower portion of my face. My flare last year left me with permanent nerve damage in my face, but strangely it is not the same side of my face that experienced the paralysis/pulling down.

I've been reading about CDIP. I haven't found many posts on PR about it.

 

[JaimeS]

CDIP

C. Diff? It might be in how you're searching.

 

[TrixieStix]

C. Diff? It might be in how you're searching.

Chronic inflammatory demyelinating polyneuropathy "CIDP" I accidentally typed it out wrong in that last message.

 

[jenny39]

I get nerves down face affected, I spent 3 days in a stroke unit a few years ago but wasn't a stroke. I got diagnosis few years later and my neuro has admitted it is the infection. I had flare up a few weeks ago and had to take 2 weeks of ciprofloxacin. My teeth were in pain then spread up face with burning sensation. I not getting much out of neuro due to still being in 3 years for medical negligence. I have about 5 months then should start getting some answers. I did read recently about a new antibiotic to treat pseudomonas now available in UK. I don't know if you can get it in the US. It is Zavicefta.

http://press.pfizer.com/press-relea...bactam-uk-and-germany-new-antibiotic-treat-co