PANDAS/PANS treatment protocol for ME/CFS?

[Jesse2233]

Several doctors are now using the Cunningham autoantibody panel to establish a case for autoimmunity in ME/CFS patients. These same autoantibodies have been linked to PANDAS/PANS, a post-infectious autoimmune disease affecting children.

A treatment protocol has emerged for PANDAS that mirrors some of the more successful ME/CFS treatments. The difference seems to be that more mainstream doctors are willing to accept and implement these treatments for PANDAS than for ME/CFS. Furthermore these treatments are implemented in a systematic and complementary way thus improving the outcomes; e.g. underlying infection is treated at the same as autoimmunity.

You will find many PANDAS communities with stories of recovery from these protocols. I wonder if the same might be true for ME/CFS (at least a subset) if these same treatments were more regularly used.

Treatment protocol:

• Antibiotics: penicillin, amoxicillin, erythromycin, azithromycin, and clindamycin
  
  
• Immunomodulation: IVIG, plasmapheresis, prednisone, rituximab, cellcept, and cyclophosphamide
  
  
• Supportive: CBT, antidepressants

Cunningham panel / PANDAS autoantibodies:

• Anti-Dopamine Receptor D1
• Anti-Dopamine Receptor D2L
• Anti-Lysoganglioside GM1
• Anti-Tubulin

Pathogens linked to PANDAS onset:

• Mycoplasma pneumonia
• Streptococcus pyogenes
• Various strains of Lyme

This is an interesting read on a young girl who recovered from severe PANDAS using rituximab and helminths

 

[Skippa]

VERY interesting, thanks...

But...

One can't help but notice...

CBT and antidepressants crop up everywhere!!

Jeez, cure them of x but create a patient for y indefinitely...

Anyways, the rest of it is cool

 

[Jesse2233]

VERY interesting, thanks...

But...

One can't help but notice...

CBT and antidepressants crop up everywhere!!

Jeez, cure them of x but create a patient for y indefinitely...

Anyways, the rest of it is cool

Hahah yes I almost didn't include that part. I suppose if you have treatments targeting the actual disease palliative care can be beneficial.

 

[Vojta]

Hi @Jesse2233, I just found out today I'm positive for anti dopamin D1 and anti tubulin in cunningham. I'm also positive on 2 antibodies in celltrend test. Dr. suggested Rituximab.

 

[Jesse2233]

This is an excellent in depth discussion of PANDAS treatment protocols and recovery

 

[Diwi9]

Cunningham panel / PANDAS autoantibodies:

• Anti-Dopamine Receptor D1
• Anti-Dopamine Receptor D2L
• Anti-Lysoganglioside GM1
• Anti-Tubulin

The Cunningham Panel also tests for the following, as described on their website:

CaMKII
The fifth test, CaMKII (Calcium-dependent Calmodulin Protein Kinase II) is a cell stimulation assay in which human serum is incubated on human neuronal cells. CaMKII is involved in the up-regulation of many neurotransmitters in the brain. The increase or stimulation of CaMKII activity by serum antibodies is measured compared to a baseline control and elevated activity may be associated with an infection-triggered autoimmune condition.

 

[el_squared]

I just got my Cunningham Panel test results back. Will be a few weeks before I see the doctor who ordered test to discuss.
I am elevated on three out of the five markers. If anyone can opine on the significance, what these means, please chime in...

 

[Dakota15]

@el_squared I know this bumping an old thread from quite some time ago, can I ask which markers you were elevated in? Was one of them CaM Kinase II?

Feel free to PM me if you'd prefer that route