Has anyone improved MCAS symptoms by treating underlying infections?

bspg

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I'm really not doing well and I'm thinking the underlying infections I have (EBV, SIBO, probable Coxsackie) could be what's triggering my MCAS in the first place. I was diagnosed with idiopathic MCAS a few months ago (I've never been able to find any specific triggers and it developed out of nowhere) and I have low-level symptoms frequently or they flare randomly.

I haven't made much improvement on my MCAS meds over the last couple of months, as it seems like they work a bit and then stop. Initially I thought that they just weren't working at all and MCAS was probably not a correct diagnosis but when I switched H1 blockers, my symptoms got better again for a week but then returned.

I've also noticed that my MCAS symptoms seem to get worse whenever I have a flare of infection-type symptoms (sore throat, body aches, flu feeling). All of this makes me strongly suspicious that these infections are somehow behind my MCAS.

I have a bottle of acyclovir for my EBV but my doctor doesn't want me to start anything new until my MCAS is controlled. I don't think that time is coming though.

I'm curious if anyone here has had success treating infections while dealing with MCAS and if the treatment improved your MCAS at all. I know IVIG has helped people with MCAS but that's not an option for me right now and I'm really more interested in experiences with antivirals, antibiotics, etc.
 

ryan31337

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Hi,

In my case symptoms that could be attributed to MCAS have improved whilst taking acyclovir for suspected viral reactivation and also whilst taking rifaximin for confirmed SIBO. Postprandial bloating, dyshidrotic eczema and fatigue especially.

I would say give it a shot, unless your MCAS is bad enough that you worry about anaphylaxis.

Ryan
 

justy

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I have chronic bacterial infections and these could be triggering my MCAS. Sadly for me, i now dont tolerate drugs at all and cant even attempt to treat underlying infections (including leaky gut and bacterial translocation). I attempted IV antibiotics this year and just a few drops set of a massive reaction and hour long seizure.
I have now been premamnently worse, M.E wise since then and now can only eat 7 foods.

Its a bit of a vicious circle for some of us, but i do now of others who have improved their MCAS by treating underlying conditions, both viral and bacterial.

No idea what those of us who dont tolerate drugs are meant to do...Just get sicker and sicker it seems.
 

justy

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For Bacterial infections
There is essential oils/ tinctures /HBOT
These are three things I know of for sure that work
I also dont tolerate essential oils, herbal tinctures and preparations, it is uncertain if HBOT is contraindicated as i have lung fibrosis and would have to travel daily to do it. I am currently almost entirely bedbound.

I basically cant take or do anything. i have only 7 foods that i can tolerate.
 

bspg

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Hi,

In my case symptoms that could be attributed to MCAS have improved whilst taking acyclovir for suspected viral reactivation and also whilst taking rifaximin for confirmed SIBO. Postprandial bloating, dyshidrotic eczema and fatigue especially.

I would say give it a shot, unless your MCAS is bad enough that you worry about anaphylaxis.

Ryan
Thank you for sharing this @ryan31337. I looked up the manufacturer and inactive ingredients of my acyclovir and the fillers are ones I'm known to tolerate. This gives me hope that I could do well with it, unless I react to or don't tolerate the actual acyclovir :zippit:

I have chronic bacterial infections and these could be triggering my MCAS. Sadly for me, i now dont tolerate drugs at all and cant even attempt to treat underlying infections (including leaky gut and bacterial translocation). I attempted IV antibiotics this year and just a few drops set of a massive reaction and hour long seizure.
I have now been premamnently worse, M.E wise since then and now can only eat 7 foods.

Its a bit of a vicious circle for some of us, but i do now of others who have improved their MCAS by treating underlying conditions, both viral and bacterial.

No idea what those of us who dont tolerate drugs are meant to do...Just get sicker and sicker it seems.
@justy I'm so sorry. :( I definitely seem to be reactive to antibiotics now, which I believe is MCAS related. Although, from what I've read it seems like many people have adverse reactions to antibiotics so maybe it's not that uncommon.

I am not entirely aware of your background, have you ever tried IVIG or immune modulators?
 

justy

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I am not entirely aware of your background, have you ever tried IVIG or immune modulators?
Im afraid that being in the UK precludes the use of IVIG. I did try low dose scig and it helped me a little, but i kept reacting to it all the time.

Literally cant take anything now for fear that i will end up with no foods i can eat.
 

Binkie4

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Im afraid that being in the UK precludes the use of IVIG. I did try low dose scig and it helped me a little, but i kept reacting to it all the time.

Literally cant take anything now for fear that i will end up with no foods i can eat.
So sorry @justy. I see why your MVP must be a real worry. I read your story when you went to see de Meirleir. Did that experience help in any way, or precipitate a worsening or have no effect at all?
 

Timaca

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Im afraid that being in the UK precludes the use of IVIG. I did try low dose scig and it helped me a little, but i kept reacting to it all the time.

Literally cant take anything now for fear that i will end up with no foods i can eat.
I'm so sorry. I don't have MCAS, but I do seem to have a histamine intolerance....and multiple food intolerances, although I can tolerate more than 7 foods. Manuka honey has helped me. I wonder if it would help you.... I started with the smallest amount, like 1/8 teaspoon. Now I take about a teaspoon a day......

If you don't mind sharing, what foods can you tolerate?
 

Learner1

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I'm really not doing well and I'm thinking the underlying infections I have (EBV, SIBO, probable Coxsackie) could be what's triggering my MCAS in the first place. I was diagnosed with idiopathic MCAS a few months ago (I've never been able to find any specific triggers and it developed out of nowhere) and I have low-level symptoms frequently or they flare randomly.

I haven't made much improvement on my MCAS meds over the last couple of months, as it seems like they work a bit and then stop. Initially I thought that they just weren't working at all and MCAS was probably not a correct diagnosis but when I switched H1 blockers, my symptoms got better again for a week but then returned.

I've also noticed that my MCAS symptoms seem to get worse whenever I have a flare of infection-type symptoms (sore throat, body aches, flu feeling). All of this makes me strongly suspicious that these infections are somehow behind my MCAS.
I've been investigating MCAS as my doc just diagnosed me with it. Interestingly, 10 years ago I had an inhaler and took ketotifen, cromolyn, etc.

Fixing my gut, improving my nutrition, doing LDA, and avoiding food and environmental allergies made symptoms go away.

But doing IVIG and taking drugs for infections seems to have flared it up.

I'm not happy about living with all the MCAS drugs and am wondering there are natural alternatives or if IVIG or any other intervention can keep it away.

It came from somewhere, why can't it go away?
 

justy

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I read your story when you went to see de Meirleir. Did that experience help in any way, or precipitate a worsening or have no effect at all?
I have definitely become worse, mainly due to drug reactions and all the travelling.

what foods can you tolerate?
Courgette, carrot, potatoes, butter, brown rice noodles, milk and oats in small amounts. I am trying to introduce new foods - quinoa has been ok in small amounts so far, kale made me itch intensely every time i tried it.

It came from somewhere, why can't it go away?
if it caused by infections then treating them could make it 'go away', although of course killing things also increases MCAS symptoms.

Dr Afrin believes it is usually a primary dx and in that case it is not curable and is lifelong, but that symptom reduction is possible. He says no one with MCAS will ever have the life they had before MCAS and i am beginning to see this is the case. It can have a tendency t step up in severity over time and i am seeing that happen with me.
 

Learner1

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if it caused by infections then treating them could make it 'go away', although of course killing things also increases MCAS symptoms.

Dr Afrin believes it is usually a primary dx and in that case it is not curable and is lifelong, but that symptom reduction is possible. He says no one with MCAS will ever have the life they had before MCAS and i am beginning to see this is the case. It can have a tendency t step up in severity over time and i am seeing that happen with me.
I'm so sorry to hear of your struggles with it. You are very wise and I know you've been through a lot.

I think I have a tendency to want to understand why things are broken and fix them. I'm always hopeful there's a way. And it just seems to me that if the body can be doing something bad, that there's generally a way to reverse it, up until the point that irreversible damage takes place.

My mom has Parkinson's, my dad had a stroke, my sister died of damage that accumulated over time... But I've also seen miraculous improvements by changing environmental factors that cause genes to express themselves differently...

Maybe its a false hope here. I found this:

http://www.mastattack.org/2015/01/progression-mast-cell-diseases-part-5/

It says that children can outgrow it. I tried to find it, but something I recently read said it can be secondary.

Looking back, I do see that it may have been in my history 10 years ago. But my symptoms were gone between then and now as I did s variety of healthy things. Fighting multiple infections and being on IVIG does seem to be flaring it up. I don't have the CKIT mutation. And a curcumin IV, boswellia, benadryl, and steroids seemed to calm down acute symptoms.

Guess I'm struggling to figure out where the messaging is that causes the mast cells to misbehave. Is it in the bone marrow or after they leave it, or everywhere? And how do we nip it in the bud?

Living with it is not pleasant. I'm hopeful that ways can be found for mast cell patients to have a better life.
 
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justy

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I'm struggling to figure out where the messaging is that causes the mast cells to misbehave. Is it in the bone marrow or after they leave it, or everywhere? And how do we nip it in the bud?

Living with it is not pleasant. I'm hopeful that ways can be found for mast cell patients to have a better life.
This is the million dollar question that Afrin and just a few others are working on. In Mastocystosis we can see the bone marrow is producing too many mast cells, whereas in MCAS the number if mast cells is normal but they are degranulating inappropriately.

I feel for anyone who has to deal with this on top of M.E, it really is a whole new level of hell.
 

bspg

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Not going to write much as I'm in a bad crash but for some reason my H1 blockers gave me a huge boost of energy over the last couple of days and now I'm paying for it dearly.

I slept over 12 hours and has terrible nightmares about people dying. I feel so weak and sick. My throat is raw and a little like it's burning, my chest feels super heavy and congested, I'm in so much pain and so exhausted I can't get up. Can't tolerate any sound.

I think antihistamines increased energy, which caused me to overdo it, which caused infections to flare. Its like a vicious cycle between competing diseases. :cry::cry::cry:
 
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This is the million dollar question that Afrin and just a few others are working on. In Mastocystosis we can see the bone marrow is producing too many mast cells, whereas in MCAS the number if mast cells is normal but they are degranulating inappropriately.

I feel for anyone who has to deal with this on top of M.E, it really is a whole new level of hell.
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.

I searched so Long and tried so much and now i truly see. It´s the End of the road. I brun my fingers with nearly every Thing I Try. Unfortunately I only tolerate meat, but the Inflamations and other creapy Things in my Body Need so much energy, that I have to eat frequently and also things I can´t tolerate.

Where is the emergency Exit button. It´s not even killing me. Like Floating in space and you have no Idea how Long the oxigen will last.

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 :(

The only possibilty to get a Little better is to get some pressure out of the System through different approaches. But there is always the risk, to become worse. But also to get better.

It eats up my life. I wish u all the best. It´s so insane. So insane
 
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This has been posted elsewhere, but maybe there's hope in the attached case study.
My Doc told me IVIG wouldn´t help me. Something against sibo for sure, but I believe it´s more complicated for severer cases. 7 years ago, when I wasen´t Aware of my mcas an run from doc to doc, I got Antibiotics and felt so good. So unbelivable normal. I cried. And after 2 Months it all got worse. And is ever since. It would be a miracle if we could heal the gut. I truly believe this would make living worth again. But how if nothing works on you and you can´t tolerate all. the right Nutrition, herbs, medication etc.