• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Has anyone improved MCAS symptoms by treating underlying infections?

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Maybe your doctor was wrong about the IVIG.

Healing the gut is critical, though. Is there a gastroenterologist or functional medicine doctor that can help you?

We are all complicated patients, and it takes a step by step peeling of many layers of this onion to make progress.

You might also look into Gingergrrl's story. Her MCAS was awful and she has been able to improve.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Try handing him the case study? I've been on a similar protocol and it's been helpful. I didn't have SIBO, but had 7 chronic infections, so we a recall a bit different.

As for your gut, things you might look into might be a stool test to look for parasites, fungi, and bacteria. Testing for Enteroviruses might be useful. L-glutamine, an elemental diet, digestive enzymes, fecal transplant, and probiotics all may be able to play a role.

And are you on any mast cell drugs that help?
 
Messages
37
He is a MCAS Doctor. One of the few in Germany. I will ask him again. Did the IVIG help with the infections? I do have some Infections too and I have no Idea how to treat them.

I got everything tested multibal times. Candida is for sure and it produces lots of bad stuff. I tried the elemental diet for my sibo and fed the Candida all the Way with the sugar :( I Try it all, but it´s rough because I can´t stop eating carbohydrates. My Body Needs the energy. If not I Crash.

I tried them all, but i don´t tolerate any. Only Tavor and Zopiclon helps sometimes. But nothing for everyday.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Yes, the IVIG helped with the infections, along with appropriate antivirals and IV antibiotics (to avoid messing up my gut). I wasn't making headway with the infections without the IVIG.

I've also benefited from customized nutrient IVs. My doctor did a Genova Diagnostics NutrEval test and found I was very depleted in many nutrients. One of my infections is notorious for sucking up nutrients. The IVs have been vitamins, minerals, and amino acids with saline, not dextrose or glucose. I was under the impression that certain cancer clinics in Germany could do them.

I'm allergic to all milk and corn derivatives which are in almost all of the MCAS meds, so I have to have them compounded. Except, I can get injectible Benadryl and use that. I also get a lot of B5, folate, B12, vitamin C, boswellia, curcumin, and quercetin, which help, both IV and orally.
 
Messages
37
unfortunately boswellia and curcumin are salycilates, which I don´t tolerate. As well as Quercentin.

Vitamines is such a Thing as well. It´s quite hard to figure out hw much, which ones in which form. The one Can help the other may harm. I have infections, that suck my nutrients up as well. I feel it.

Whatfor is the B5 in your case?

Curcumin would be so lovely. It was tested good for my inflamation. But my MCAS sees it different
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Copy that. It´s like you have all These severe health conditions (me/cfs, allergies, Viral infections, Adrenals, Gut, Sibo, Candida and so on) and then the one on Top, which makes a cure for any of the others and itself impossible.

Yes, i hear you on this!

I searched so Long and tried so much and now i truly see. It´s the End of the road.

I'm always sad to hear anyone say this, but my situation is the same as yours and i know i am also at the end of my road. I cant keep searching because trying anything is making me worse year on year. I now only tolerate 8 foods, and still react almost daily to some of these or other things that get into my environment. I keep catching things and the viruses, colds etc keep setting off my mast cells, making it almost impossible to eat.

Anyways. I have been in Bonn Germy (Research Center for MCAS) and the Dr. told me, there is hope, even for People that don`t tolerate drugs well. Next year some new medications will be on the market. No names and no further Information :(

How expert is you MCAS Dr? i'm very interested in hearing more about the Dr you see and the Bonn centre - although I understand you dont have any info about the drugs. If and when you do get info on the drugs etc please let me know. Or contact me by PM about your Dr.

But how if nothing works on you and you can´t tolerate all. the right Nutrition, herbs, medication etc

This is a massive problem for me, and people often give advice - you could just try this or that, when i literally can barely eat, let alone risk trying anything new!

As for your gut, things you might look into might be a stool test to look for parasites, fungi, and bacteria. Testing for Enteroviruses might be useful. L-glutamine, an elemental diet, digestive enzymes, fecal transplant, and probiotics all may be able to play a role.

See my post above. Im in the same boat as Jasper and couldnt take probiotics at all, nor most supplements. If i react to them i might lost more foods. Zero point in testing for viruses, parasites, fungi etc when you can do literally nothing to kill them. No idea what people like us are supposed to do...

Curcumin would be so lovely. It was tested good for my inflamation. But my MCAS sees it different

Yep, me too - one tablet of curcumin and two hours later i was rushing too the loo with severe gut pain that went on all night - i wont say more about it for fear of TMI, but sadly me and curcumin do not mix.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Vitamines is such a Thing as well. It´s quite hard to figure out hw much, which ones in which form. The one Can help the other may harm. I have infections, that suck my nutrients up as well. I feel it.
Figuring out vitamins is not a do-it-yourself project, especially when one is so ill. Pathways shut down and things don't work, leading to all the many symptoms. It takes some expertise in biochemical nutrition to untangle the mess.
Whatfor is the B5 in your case?
As my doctor explained it, it speeds up metabolizing the mast cell products, so I can get rid of them faster.
Curcumin would be so lovely. It was tested good for my inflamation. But my MCAS sees it different
We all have to find what works. I've found getting purer versions of things into my veins rather than trying to ingest them through products with extra ingredients works better.
Im in the same boat as Jasper and couldnt take probiotics at all, nor most supplements. If i react to them i might lost more foods. Zero point in testing for viruses, parasites, fungi etc when you can do literally nothing to kill them. No idea what people like us are supposed to do...
I hear your pain and frustration. Having gone through cleaning up my gut from undiagnosed celiac, MCAS and multiple food allergies, a whopping candida infection, shigella, chemotherapy, and the aftermath of ciprofloxacin a few years back and an oral triple antibiotic regimen last year, plus dealing with my children's undiagnosed celiac, multiple food allergies, norovirus (which required hospitalization), roundworm, hookworm, pinworms, and blastocystis hominis, I agree it's vexing and challenging.

First, if you have a parasite sucking up your nutrients, it can be devastating. Finding any and removing them is essential.

Second, if your gut lining is damaged, you're going to be leaking particles of anything you eat into your bloodstream so that your immune system (mast cells, etc.) will react in one way or another, so feeding the gut lining is a critical step. Even my oncologist recommended 15g of l-glutamine a day for this purpose.

Third, if you can't take in nutrition, biochemistry begins to shut down, leading to problems ingesting salicylates, etc.

If I were in this situation, I'd look at cleaning everything out of my gut, as if for a colonoscopy, getting nutrients by IV (with a doctor's help) and getting glutamine and glycine into my gut.

If what's living in my gut was so bad, than I'd look at getting a fecal transplant. It is beyond experimental where I live. And then carefully adding in probiotics of different types, with adequate insoluble fiber to feed them. Along with betaine HCl, digestive enzymes, etc.

Then, calming the immune system down and slowly refeeding.

None of this is easy to do, its extremely difficult, and needs expert guidance. The conventional gastros are little help. But from battling these issues over the past 10 years, I believe that progress can be made with thoughtful application of the right expert help. And its the path to survival.

I am so sorry you are experiencing this... It is truly difficult.
 

MTpockets

Senior Member
Messages
202
Location
AZ, USA
I totally agree with Learner1. It has taken me YEARS of trial and error and extremely restrictive diets to heal my gut. The l-glutamine was key as well as digestive enzymes, milk thistle to stimulate my gall bladder, probiotics, and careful supplementation. I had 4 safe foods for a whole year. But very slowly things started to change and now my safe list has so much variety.

I still have trigger foods and I still get mast cell flares, but it is a journey worth taking. My over all health has improved noticeably since my gut has healed. I am even able to tolerate very low doses of antivirals, antiparasiticals, and antifungals now. I honestly never thought that would ever happen. Go slow. Keep your epi pen handy and see what you can do.

As a side note there are probiotics that actually help with MCAS. Most of the Bifidus family actually helps. They are the only ones I can tolerate. I get flares if I deviate from my safe strains. Keep fighting!!
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
,
As a side note there are probiotics that actually help with MCAS. Most of the Bifidus family actually helps.
There's an interview with (IIRC) Dr. Theoharides wherein he says just that. Switch to soil born types like Bifido.

Also said that although the 'diversity' is much vaunted generally (as by Grace Liu, et al.) in probiotics, for anyone reactive they should instead try single strains since there is less diversity to react to - either in the bacteria's little bodies or in their chemical products. There was a strain of lactobacillus mentioned, which I unfortunately don't remember.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
I have just realised I might have MCAS too. It seems that the long term Borrelia infection may have caused this.

I am steadily becoming more and more sensitive to my medicines (and food , soaps, scents, clothes etc etc)

I will have had to go off all my meds until we can work out what is safe.

Not much fun.

Any advice gratefully received.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Since you are asking for advice... I think it might be wise to deal with this in phases... That is, you have to solve some problems in the short term, while looking toward long term goals.

I don't have Borrelia, but my daughter has a chronic case that long term antibiotics didn't help. We've learned in the long run, 10 pass ozone seems to be the most effective in beating it back, with several sessions closer together and a booster every 3 months.

MCAS can be genetic or autoimmune. My doctor, a top ME/CFS specialist, tested me for the genetic KIT SNPs and found none, so he thinks mine is autoimmune, triggered by one or more of my infections. He found I had high prostaglandin D2 and Chromagranin A to diagnose it. The tests must be kept cold to be accurate.

My histamine and tryptase, the 2 most common tests, were low, and they can be low while still having MCAS, so they were not helpful. I believe this is because I avoid my food allergens, and an on a fine tuned methylation protocol with lots of vitamin C, B5, quercetin and curcumin to help clear out undesirable things (allergens, toxins, and metabolic waste).

Then, he put me on ketotifen, cromolyn sodium, ranitidine, and diphenhydramine to help my gut symptoms - I had nausea a lot of the time and painful intestines. He mentioned that he's consulted with Dr. Afrin, one of the 2 top specialists (the other is Dr. Theoharides who has an informative website), and th St if my symptoms didn't calm down, that Gleevec might be helpful - he'd put 4 patients on it so far and it worked wonders. It's also quite expensive, so could be out of reach for many.

Attached is a paper listing a lot of drugs and natural substances (like curcumin, quercetin, and vitamin C) that play different roles in MCAS treatment. The second attachment is a case study of a woman that was the subject of this week's Health Rising article - her MCAS, POTS, and SIBO were successfully treated with Iow dose Naltrexone, IVIG, and Rifaximin.the others here have used similar strategies, on a full gamut of MCAS and POTS meds, but able to reduce them as the autoimmunity lessened. I've found benefit from Naltrexone and IVIG over the past year as in the case study.

As for digestion and diet, being on a whole food, anti inflammatory diet can be helpful while you heal your gut. My doctor suggested I-glutamine to rebuild my gut lining after chemotherapy, and high quality probiotics, digestive enzymes, and stomach acid can be helpful. A good book that can help you troubleshoot is "The Food Intolerance Bible" by Anthony Hayne. If your digestive sysyem is happier, you won't have partially digested food particles leaking into your bloodstream, which your immune system reacts to.

A DNA stool test mught help you identify any parasites, fungi or viruses, in addition to an unfortunate mix of bacteria in your intestines, and treating whayever is found would be helpful, too. In my family, different members have had Candida, c. difficile, who tells, h. pylori, roundworms, pinworms, and blastocyst is hominis... we all are celiac and it seems that once you have an unhappy gut, it leaves you open to opportunistic infections, riling up the immune system, causing "leaky gut" and causing malabsorption of nutrients.

The last thing is to check your nutritional status. If all of this has been going on for A while, you may be deficient in key nutrients like amino acids, B vitamins, anti oxidants, lipids and trace minerals, all needed for your body to repair itself and to run your immune system.

All of this must seem overwhelming, but ideally, working with a knowledgeable functional medicine doctor, or through self help with the book I mentioned and the many good resources on the internet these days, and at least a cooperative GP that will run the tests you need, you can sort all of this out, and strengthen your body to minimize your symptoms.

I'm not a doctor, but have been through much of this myself, and it does get easier as one works their way through this, with the reward of eating a broader diet, being able to reduce meds, and having fewer symptoms.

Hang in there! :hug:
 

Attachments

  • Afrin Drugs for MCAS.pdf
    891 KB · Views: 37
  • POTS MCAS IVIG LDN.pdf
    823 KB · Views: 23

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Yes, there is, but the result is understanding how your body works better and empowers you to take charge of your healing process.

Our doctors are busy and don't know everything, no matter how smart they are. I've found that understanding my labs, reading research, formulating my own questions, and bringing new insights and helpful studies and treatment ideas to my doctors has gotten me better care over time.

Take it one step at a time, and work your way through this big puzzle facing you, piece by piece and youll start to make headway.:hug:
'
 

Blake2e

Senior Member
Messages
154
Yes, there is, but the result is understanding how your body works better and empowers you to take charge of your healing process.

Our doctors are busy and don't know everything, no matter how smart they are. I've found that understanding my labs, reading research, formulating my own questions, and bringing new insights and helpful studies and treatment ideas to my doctors has gotten me better care over time.

Take it one step at a time, and work your way through this big puzzle facing you, piece by piece and youll start to make headway.:hug:
'
Totally agree with this sentiment. Take charge, teach yourself what you need to know and lead on. Thats the difference b/w those who overcome and those that dont.