Has anyone successfully treated mycoplasma IgM and Cunningham / PANDAS autoantibodies?

[Jesse2233]

Dr Chheda has found high IgM titers for mycoplasma pneumonia and sky high Cunningham autoantibodies. I understand that PANDAS (a pediatric neurological disease that the Cunningham panel was designed to diagnose) is often caused by an ongoing mycoplasma infection (or strep / Lyme).

I was wondering if anyone has treated their mycoplasma with antibiotics (such as azithromycin) and seen a drop in Cunningham autoantibodies as well as an improvement in symptoms. I've seen users on PANDAS messageboards have success with this (sometimes in conjunction with antibiotics and IVIG, plasmapheresis, or immunosuppression), but have seen very little about the Cunningham panel on PR.

Labs below for reference.

 

[drob31]

Is the first test an autoimmune panel?

 

[Jesse2233]

Is the first test an autoimmune panel?

Yes, the Cunningham panel

 

[Learner1]

Yes, the Cunningham panel

What lab does it? And how is it related to mycoplasma?

 

[Jesse2233]

It's done by a lab called Moleculara. Apparently mycoplasma can trigger the autoantibodies and in theory they can decrease with antibiotics


http://europepmc.org/abstract/med/44608

 

[Learner1]

It's done by a lab called Moleculara. Apparently mycoplasma can trigger the autoantibodies and in theory they can decrease with antibiotics

http://europepmc.org/abstract/med/44608

Thanks, @Jesse2233 ! I have mycoplasma pneumoniae and a bunch of other antibodies... and am on IV doxycycline and azithromycin. I guess I'll hope for the best here....do you suppose I need another test at this point?

 

[Jesse2233]

Thanks, @Jesse2233 ! I have mycoplasma pneumoniae and a bunch of other antibodies... and am on IV doxycycline and azithromycin. I guess I'll hope for the best here....do you suppose I need another test at this point?

It'd be interesting to see if they've gone done, but if you're feeling better that's what counts!

Reading through the treatment protocols for PANDAS is really interesting...

Studies have found several effective PANDAS treatments that can result in prompt resolution of symptoms, including antibiotic therapy, plasma exchange (plasmapheresis) and intravenous immunoglobulin (IVIG) treatments. Other supportive therapies include antidepressant (SSRI) medications and cognitive behavioral therapy (CBT).

On plasmapheresis

PLASMAPHERESIS (APHERESIS) OR PLASMA EXCHANGE (PEX)
In this process the harmful auto-antibodies are removed from the blood system itself. This procedure is done in a hospital setting. Please read about the procedure here.

The success rate for this procedure is equally very good. There are not many providers that offer Plasmapheresis for PANDAS and PANS, but those that do have cited seeing symptoms improve even while the procedure is till occurring. When a child is presenting with very severe symptoms that would be considered “life threatening”, Plasmapheresis may be the preferred method of treatment due to the quick response rate. An example of a life threatening symptoms would be severe restricted food intake with significant weight loss and suicidal thoughts.

What is not clear is if the child’s autoimmune system will recreate the negative antibodies. It has been reported that PEX has had to be repeated (as with IVIG) in a few cases. Again, prophylactic antibiotics should be maintained.

 

[Learner1]

It'd be interesting to see if they've gone done, but if you're feeling better that's what counts!

Reading through the treatment protocols for PANDAS is really interesting...

Studies have found several effective PANDAS treatments that can result in prompt resolution of symptoms, including antibiotic therapy, plasma exchange (plasmapheresis) and intravenous immunoglobulin (IVIG) treatments. Other supportive therapies include antidepressant (SSRI) medications and cognitive behavioral therapy (CBT).
On plasmapheresis

Thanks! I think I'll skip the CBT and SSRIs...

I start IVIG on Wednesday and am hoping for the best...

I've also followed Shawn's saga on other threads... He's sure explored the gamut...

One step at a time, though!