This is topic The use of LDN in MCAS and POTS in forum General Support at LymeNet Flash.

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Posted by Lymetoo (Member # 743) on :


I'm taking LDN with great success (for MCAS) and Sjogren's.
Posted by aklnwlf (Member # 5960) on :
Hi TuTu! Great info! Who prescribes your LDN? Also how much do you take and did you have to work up to that? Might want to mention this to my allergist.
Posted by Lymetoo (Member # 743) on :
My internal med doctor prescribed it. He had no idea about dosage but was willing to let me try it. He prescribed 50 mg .. way too high.

A friend told me to use only 1 or 2 mg. So I tried to dump out part of the dosage each day for several weeks. It was crazy.

I finally called the compounding company my friend used and asked my doctor for another prescription. (this guy is golden, believe me)

So I started back on about 1/4 mg and worked my way up. The usual clue that the dosage is too high is a headache.

I had to go VERY slowly.

I have settled on 1 mg. That's it. Every time I try to raise it, I don't feel well.
Posted by aklnwlf (Member # 5960) on :
Thanks for the info TuTu! I think I'll wait and talk with my allergist when I see him next year. I don't know if my GP would even consider prescribing it. Thanks for the tip that headaches mean that the dose is too high.

Posted by Ann-Ohio (Member # 44364) on :
This case study is in a British Medical Journal: The full text is available free! I split this Summary up for easier reading. (I still have a lot of trouble with acronyms! So glad they translate all of them here.

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 endorphins

which 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.

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