Tuesday, May 7, 2019

PANDAS/PANS and Lyme, clinical notes


PANDAS and Lyme.

Based on my beliefs and clinical experience.

Mainstream medicine currently does not recognize PANS, the notion that other infectious organisms can induce the same disorder or exacerbate the disorder.
PANDAS stands for: Pediatric autoimmune syndrome associated with streptococcal infection. 

PANS stand for Pediatric autoimmune neuropsychiatric syndrome.

I would suggest the proper acronym is ANS.  The disease is not limited to children and occurs in adults.  

Mainstream view: Strep only.  Autoimmune, not related to persistent infection.
Alternate view:  Multiple microbes may be involved including tickborne pathogens: Lyme and Bartonella. Maybe others. 

When confronted with something new it is only natural that doctors compare the disorder to other similar ones, well described and put place the new illness into a similar, pre-made boxe..  Streptococcus is well known to be associated with a variety of syndromes which may be averted with early treatment. The syndromes in question are autoimmune and post-infection – as  every medical student knows and include rheumatic fever and glomerulonephritis. 

Rheumatic fever (RF) can weaken heart valves, cause arthritis and lead to a movement disorder. RF is rarely seen these days. 

PANDAS was put in the box of RF. Lyme, not even considered, would likely be put in the same box if so discovered. 

Most practitioners see PANDAS, PANS as a subset of autoimmune encephalitis. Therefore, the RF analogy is incorrect.  PANDAS/PANS is something else.
Novel autoantibodies have been discovered, i.e. Moleculera Cunningham panel.
PANDAS/PANS (PP) responds to IVIG. IVIG  has not benefited acute RF in clinical trials. 

Immune modulation with drugs for autoimmune encephalitis including rituximab has helped some patients with PP (with other therapies). 

PP is associated with sudden neuropsychiatric symptoms which appear overnight.
Typical symptoms include:  change in behavior/personality, OCD, tics, Tourette’s, anxiety, ODD and others. 

The disorders are not limited to children. There exists a population of adults, long treated with psychiatric drugs, ineffectively, who have persistent PP symptoms which may respond to PP therapy to be described. 

Primary therapies include: IVIG and antibiotics. 

In patients with chronic Strep pharyngitis/tonsillitis tonsillectomy may be of benefit.
The duration of antibiotic therapy and of IVIG is best left open. Every patient is different. 

If Step is the only concern drugs like amoxicillin or Zithromax may be adequate.
IVIG. Two issues to discuss. 

One theory is that treatment need be given only once every 6 months the other is it must be given every 3-4 weeks.

Dose: Getting approved for IVIG is difficult. Getting IVIG approved for the optimal dose is more difficult. 

There are 2 general sets of illness and 2 dosing sets. 

Neurological disorders are treated with high dose IVIG (1.5- 2 gm/kg) and immune deficit disorders low dose IVIG (0.4-1 gm/ kg)

PP patients are usually only approved for low dose therapy. 

(I am not saying the patients who truly have an immune deficit will not benefit from low dose therapy, rather I am say PP patients will receive an inadequate dose). 

There is a theory that low dose IVIG can actually make PP worse. I think this may apply when the therapy is given subcutaneously once weekly, not IV. Patients should receive IV therapy. The starting dose is generally around 0.6 gm/kg and the dose may be titrated upward based on clinical effectiveness. Published data with other forms of autoimmune encephalitis suggest doses as low as 0.4 gm/kg have been helpful.

Patients with Lyme, more often than not, also are infected with Bartonella and Babesiosis. 

Therapy should start with doxycycline because it covers a wide array of other coinfections and possible contributors, such as Mycoplasma. 
Bartonella therapy is generally inclusive of Rifampin/rifamycins and possibly Dapsone. 

I think Dapsone may not be a great Lyme drug but rather have great activity against Bartonella. 

As discussed elsewhere, antimicrobial choices may need to be shifted to cover the complete array of coinfections, including Babesia. 

Antimicrobial therapy, in the presence of tickborne pathogens may need to be low and slow because of the risk psychiatric Herxheimer reactions and worsening of autoimmune neuropsychiatric symptoms.

If Step is primary a higher dose needs to be used. Something like Keflex might be a consideration since it kills only Strep and no tickborne pathogen that I am aware of. This is the idea that targeted therapy may reduce psychiatric Herxheimer effects.

I reiterate: I think medicine is a weak science.  In PubMed there are hundreds of thousands of references to hypertension and yet recommended therapies seem to change every year or two. 

Medical studies, by necessity are internally valid. Yes, there are biases from the get-go. Aside from that: inclusion criteria are narrow (symptoms and lab tests), therapies are limited, e.g. one antibiotic and endpoints are narrow – e.g. one symptom is evaluated, such as improvement in cognition. To date, study groups have not used consensus methods (each group have evaluated the symptom with a different set of tools).
Studies frequently lack external validity or real-world application.  Minimal results are expanded, generalized -- to fill an ethos of preexistent belief about the inherent nature of the disease and its appropriate treatment. 

Evidence Based Medicine as a construct only looks at clinical studies, frequently deficient, and excludes basic science research and “biological plausibility.”
PP remains “controversial” and contested much as does Lyme writ large. What else would you expect?


Not to be used to diagnosed or treat any patient or particular illness. My clinical impression are presented strictly for general informational purposes.




7 comments:

Madonaldo said...
This comment has been removed by a blog administrator.
Unknown said...

I have autoimmune encephalitis and was significantly worsened by low dose IVIG (5 grams) so I'd say it is definitely possible.

I know a few others with Autoimmune Encephalitis who were worsened by low doses as well while they improved on high doses.

lymie said...

I think your comments about evidence based medicine are very true. The clinical trials may strive for identical patients as the study group, but they seldom are. How will genetic and gender, nationality and other factors influence the results? We know that any studies that only consider lyme in a patient, and not coinfections, and may not even look for them, much less look with a really accurate test.....these are far from identical. Therefore, how can you rely on this evidence?

The Klempner NIH-funded study used the same or even less medication than most of those patients already had done. These were chronic cases. When it was pointed out by lyme advocates and organizations, they were told it was just the first of a series of NIH studies and others would involve difference medication protocols. That never happened and was obviously never intended to happen. This was their way of shutting down the question of chronic. And ever after, they have pointed to that old study, with many flaws, as the final answer. This is how medicine is perverted.

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