Case Study: Successful treatment of POTS and MCAS using LDN, IVIG and antibiotic treatment (1/11/18)

[Jesse2233]

Summary
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.

http://casereports.bmj.com/content/2018/bcr-2017-221405.full

 

[ljimbo423]

From the article-

We also theorise that eliminating SIBO can lessen MCAS and subsequent POTS by reducing intestinal permeability, thus reducing MC recruitment as well as T-cell activity and cytokines which activate MC.

In the present case, severe symptoms of MCAS preceded onset of POTS, thus, two driving forces are theorised to be important: mast cell activation adjacent to autonomic nerves and/or persistent recruitment and/or activation of MC due to bacterial overgrowth.

Although this is just one case study, it shows the importance of SIBO in treating these symptoms.

After 10 years of struggling and trying many different protocols, I'm finally getting great relief in symptoms, consistently, by aggressively treating SIBO and leaky gut. I think a leaky gut can cause all kinds of immune system problems and symptoms with it.

@Jesse2233 - It sounds like you are doing really well. I have read many of your posts and it seems to me that you are going to recover whatever it takes!! I feel the same way about my recovery! Best of luck to you.

Jim

 

[Jesse2233]

After 10 years of struggling and trying many different protocols, I'm finally getting great relief in symptoms, consistently, by aggressively treating SIBO and leaky gut. I think a leaky gut can cause all kinds of immune system problems and symptoms with it.

What sort of improvements are you seeing?

I got in touch with the woman from this arcade study. She’s the real deal, from what she told me...

So long as I stick to my routine, I’m pretty darn good. I still don’t sweat much (but no longer faint if i get warm...), and I still have some pressure-induced angioedema making it tough to sit in one position too long, and I still wear compression stockings and binder to avoid discomfort upon standing, but I’m otherwise pretty normal. I get some random inflammation if I don’t stick to my whole-plant diet, but that’s decreasing. I’m still improving every month. Just last month I regained deep sleep, for example. Now I’m focussing on gut health, to see if I can get off IVIg.

P.s., but as far as functionality...I can do anything except sit still for a long time (because of the delayed-pressure urticaria...not the POTS). Lately I’ve been XC skiing at 7000 feet altitude daily and feeling great. I used to feel like I was gonna die just being at this altitude.

 

[ljimbo423]

What sort of improvements are you seeing?

Energy level has about doubled and less PEM or no PEM with more physical activity.

Chronic sinusitis symptoms, like runny nose and congestion have improved a lot and are much better controlled now with just nettle leaf extract and quercetin instead of antihistamines.

Probably the biggest improvements I am seeing are just that I feel much better and happier. My quality of life has improved greatly!

The flares I use to get that lasted 5-7 days, feeling like I had the flu, now only last 1- 1 1/2 days or less. I really can't think of any symptoms that haven't improved in the last 9 months of treating my gut.

but as far as functionality...I can do anything except sit still for a long time (because of the delayed-pressure urticaria...not the POTS). Lately I’ve been XC skiing at 7000 feet altitude daily and feeling great. I used to feel like I was gonna die just being at this altitude.

For 6 years, she became disabled owing to orthostatic symptoms, fatigue and body pain.

She must be one happy camper! What a great turn around.

 

[wingate]

@Jesse2233

This was an interesting case study. I was curious if you had shown it to the physicians you have been seeing for treatment.

I would be interested to hear what they would have to say.

 

[Jesse2233]

@Jesse2233

This was an interesting case study. I was curious if you had shown it to the physicians you have been seeing for treatment.

I would be interested to hear what they would have to say.

Haven’t had a chance yet, but I’m sure they’d be interested

 

[Gingergrrl]

From your article (Jesse)

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

This is what we believe I have (an autoimmune neuromuscular disease plus POTS/MCAS). 99% of doctors would probably still give me a CFS label but it is just not quite right in my case even though great overlap. I wish there were more studies on the use of high dose IVIG for autoimmunity, POTS and MCAS but not hopeful it will happen any time soon b/c of the cost and b/c I guess not interesting enough for most doctors/researchers to study.

 

[Freakyfriday]

Energy level has about doubled and less PEM or no PEM with more physical activity.

Chronic sinusitis symptoms, like runny nose and congestion have improved a lot and are much better controlled now with just nettle leaf extract and quercetin instead of antihistamines.

Probably the biggest improvements I am seeing are just that I feel much better and happier. My quality of life has improved greatly!

The flares I use to get that lasted 5-7 days, feeling like I had the flu, now only last 1- 1 1/2 days or less. I really can't think of any symptoms that haven't improved in the last 9 months of treating my gut.





She must be one happy camper! What a great turn around.

I also find quercetin extremely helpful.

 

[voner]

@Jesse2233,

thanks for posting this. The paper said that the patient is a biostatistician! it seems that the criteria used for insurance approval of IVIG was delayed pressure urticaria, which seems to involve mast cell activation.

here is a quote from the patient’s perspective,

..I referred myself to Mayo AZ, who confirmed it, and they started treatment with all the many drugs listed above. I was also diagnosed with ‘delayed pressure urticaria / angioedema’, DPU which is a mast cell problem where physical pressure leads to localised pain and swelling for days after. It’s a comically cruel problem to have along with POTS because one keeps you from being upright while the other keeps you from being able to lie down comfortably more than a few minutes … so you writhe on the ground mostly. But I’m grateful I have it because it’s the diagnosis that allowed me to receive IVIg! I feel like I won the lottery last year by discovering LDN, IVIg and SIBO treatment. LDN made me feel noticeably happier, more energetic, in less pain and with better digestion (and these things got better with each dose increase). IVIg was an absolute miracle and within a week gave me a life back, with a huge improvement of numerous symptoms, most importantly fainting, nerve pain and delayed pressure angioedema...

 

[Adelekam02d]

I am new here, I live in AZ, I have MCAS, I have it for over 20 years, I am taking cromolyn, allegra, zantac, all these help but not enough, I have not been tested for SIBO. could you let me know which Dr. have you seen at Mayo? th