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Successful treatment of POTS and MCAS using LDN, IVIG and antibiotic treatment

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
This case study, published in December, discusses a patient who's seen many doctors before finally being diagnosed with MCAS and POTS and being put on this protocol:

A patient with severe postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS) received immunotherapy with low-dose naltrexone (LDN) and intravenous immunoglobulin (IVIg) and antibiotic therapy for small intestinal bacterial overgrowth (SIBO). A dramatic and sustained response was documented. The utility of IVIg in autoimmune neuromuscular diseases has been published, but clinical experience with POTS is relatively unknown and has not been reported in MCAS. As a short-acting mu-opioid antagonist, LDN paradoxically increases endorphinswhich then bind to regulatory T cells which regulate T-lymphocyte and B-lymphocyte production and this reduces cytokine and antibody production. IVIg is emerging as a promising therapy for POTS. Diagnosis and treatment of SIBO in POTS is a new concept and appears to play an important role.
 

Attachments

  • POTS MCAS IVIG LDN.pdf
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aaron_c

Senior Member
Messages
691
I saw this. As I read through it though it became apparent that IVIG was the important piece. Here is the outcome:

After 10 IVIg treatments, a previously scheduled appointment at Mayo Clinic Scottsdale included autonomic testing which showed resolution of tachycardia with head-up tilt along with improvement in sudomotor function. At the time of submission of this report, the patient has had 20 IVIg treatments with a maximum of 5 weeks without one because the effects start to wear off.​

It's great that this is working. Unfortunately, IVIG is an expensive treatment at $10,000-$30,000 per dose before insurance, and having to do that every 5 weeks will be financially taxing no matter who pays for it.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My insurance is covering it, at $5,000 a dose every 3 weeks. My ME/CFS doctor prescribed it.

I have MCAS, POTS, and adrenergic and muscarinic antibodies, and I've been on a similar protocol and it has helped me. I was able to ski for 5 hours yesterday for the first time in 3 years with no PEM today. I still have a ways to go to be normal and my doctor wants to double my IVIG dose and increase my MCAS meds to get further ahead.
 

Murph

:)
Messages
1,792
case history and treatment seem very similar to @Gingergrrl !!

(if the hospital in question were in LA not Arizona i'd feel the thing was a terrible breach of privacy!)
 

ebethc

Senior Member
Messages
1,901
My insurance is covering it, at $5,000 a dose every 3 weeks. My ME/CFS doctor prescribed it.

I have MCAS, POTS, and adrenergic and muscarinic antibodies, and I've been on a similar protocol and it has helped me. I was able to ski for 5 hours yesterday for the first time in 3 years with no PEM today. I still have a ways to go to be normal and my doctor wants to double my IVIG dose and increase my MCAS meds to get further ahead.

what MCAS meds do you take?