Clinically the patient had the encephalitis/meningitis 9 months ago but PCR from LP has provided the reason for the continued symptoms. Anyone have expert knowledge in what can be done aside from observation in such a case? The patient has symptoms and they could be related to CoxsackievirusB - but how can this be proven aside from accurate treatment and then observation of what happens clinically?
Difficult one, more info needed:
1- Is there clinical deterioration?
2- Is there radiological evidence of ongoing active disease?
3- Is the patient immunosuppressed? previous anti-B cell therapy or Is it a case of chronic ME in agammaglobulinaemia?
4- same serotype?
5- Paediatric or adult?
6- has the patient been treated with IVIG (including intraventricular?)
1) yes - leg motor weakness, sensory changes, and mind and memory issues progressive.
2) 3T MRI Brain showed areas of damage, but could have been from multiple etiology - yet nothing that was a conglomeration of damage and nothing that radiology team looked at.
3) normal immune system.
4) serotype was "b"
5) adult
6) no IVIG - in the US insurance companies pretty much rule every medical decision with need of "medical necessity and documentation" - so while I did consider the IVIG it would need support of infection specialty.
Allen Orehek seems like you have a case of a chronic coxsackie meningoencephalitis.
Ways to go from here:
1- consider biopsy to confirm diagnosis/characterise it
2- IVIG might be of help
3- involve I.D or Neuro.
Best
We reached out to I.D. but no help yet. (The patient has a medicare advantage plan and when she called the network doctors who will see such case Infectious disease - a group of 13 of them - have refused to see her.) So we are looking for other East Coast U.S. ID places that may help. I like the idea of the IVIG but she (again insurance) will need medical documentation and medical necessity and the proper ICD10 codes to be able to get that approved by her medicare advantage plan.
I'm not sure how the U.S healthcare system works, but from what I hear, it is pretty tough for your patients...
All the best for her.
Thank you Mohamad-Ali Trad If in the proper location the U.S system works great for many problems, but when people have restrictions due to their insurance - well they just do not have access to what is needed. Appreciate your input and we have continued to reach out to ID centers to take the case for evaluation.
Alternatively, you could refer to a neurosurgeon for a biopsy (safe procedure in general)- histopath and micro, would give you the answer! and hence if you have a diagnostic yield, then makes things better from an access point of view.
Mohamad-Ali Trad any chance you have any published papers on the chronic coxsackie meningoencephalitis - I am not even able to get U.S. ID team to consider a diagnosis. They do not know what it means, but they say do not worry about it - yet no treatment. Most reference the same papers that I have read - and they are mostly about the acute and severe cases - but this case is chronic.
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