MCAS and IGG Treatment-The Journey Begins Again.

[Gingergrrl]

It's not a focus of mine either and honestly, when someone says you will never get well unless you help you microbiome, I am Leary. I agree the gut is a huge issue, but I have other issues that are foreshadowing it to a level of ....one...thing...at a time. I am on so many things right now suddenly.

I don't know that I am leary of it vs. I just don't feel it is the source of the problem in my particular case. I was negative on SIBO test, negative for H-pylori, and negative on other GI tests. I don't have current GI symptoms and I tried too many probiotics to even count (back in 2013 & 2014) and they never made any difference. I had major GI problems as part of my MCAS but once the MCAS went into remission, they were gone.

@Gingergrrl -thank you! I so hope so, too. I am waiting for Maitland to order it as I talked to her and now she does not want me working with my doctor.

So without that local doctor, does that mean you will have to travel to Dr. Maitland for IVIG or will you do it at home with an infusion nurse?

I have actually made some jewelry!

That is great news!

I see a dysautonomia neurologist on Tuesday.

Is it a consult or will you be having a TTT or other testing? My experience with a dysautonomia neuro was a true nightmare although it led to the discovery of the weird autoantibodies and I will always be grateful for that part.

 

[Misfit Toy]

I don't know that I am leary of it vs. I just don't feel it is the source of the problem in my particular case.

For me, it's something that we have been hearing about lately. If you don't treat the gut you won't get better. This is the new thing to hear and read about. It may be true, but I have had test after test that comes back negative and I honestly don't feel it's my issue. Also, CVID causes stomach issue and so does MCAS.

Ginger, I may have to travel to Maitland or my local doctor here will be able to do it. I think with sub-q you only have to have a nurse or doctor around twice, but then you are on your own with sue-q.

It's a consult with the neurologist but then she may want to do a TTT. No one has ever done that for me. I know it's a horror story. I will ask about autoantibodies tested, too!

 

[Gingergrrl]

Ginger, I may have to travel to Maitland or my local doctor here will be able to do it.

I think I misunderstood and if your local doctor is still an option (so you don't have to travel to NY), that seems ideal.

It's a consult with the neurologist but then she may want to do a TTT. No one has ever done that for me. I know it's a horror story. I will ask about autoantibodies tested, too!

I had a TTT early on (2014) b/c my symptoms of POTS were so severe with HR in the 160's and 170's on a daily basis until I was put on beta blocker. Then I had a second TTT done at Stanford in 2016. The TTT is not that bad but the Neuro that I saw was so mean-spirited, it was soul-crushing. Will tell you about that some time off the board. I think I was tested for specific autoantibodies due to the level of muscle weakness and breathing weakness/shortness of breath that I was having at that time to rule out myasthenia gravis (which it did) but ended up finding other stuff.

 

[Misfit Toy]

I think I misunderstood and if your local doctor is still an option (so you don't have to travel to NY), that seems ideal.

Hey Ginger, I am so tired I don't think I am saying the right things. My local physician...my regular doc, not my immunologist. I won't go back to her if I can help it. I am going to email Maitland to see if she reached out to my regular GP. That is who I mean.

As far as mean spirited docs....UGH. Was the doc at Stanford mean? I don't miss Stanford in the sense that it was a great hospital and great docs, but no one took insurance. You had to pay everything up front. I would be reimbursed later and not always the amount I paid. Having said that...I know its the greatest hospital.

The PT department at Stanford was excellent. What I do miss is Palo Alto. I so miss it there. Nice sunny weather.

 

[ebethc]

Also, CVID causes stomach issue and so does MCAS.

I didn't know that! Can you share some more?

I know histamine plays a role in creating stomach acid, but i'm a little confused .. I have LOW stomach acid which seems contrary to MCAS, which is excessive histamine..

My problems started in childhood.. around the same time as digestive problems... I also was always a little overweight, which I'm convinced is part of some digestive/metabolic malfunction... I pushed through the fatigue and always played sports, but still didn't lose weight

 

[Gingergrrl]

Hey Ginger, I am so tired I don't think I am saying the right things. My local physician...my regular doc, not my immunologist. I won't go back to her if I can help it. I am going to email Maitland to see if she reached out to my regular GP. That is who I mean.

Got it now and that makes sense. Hoping Dr. M can reach your GP so you can move forward.

As far as mean spirited docs....UGH.

I'll tell you that story in the future off-line.

I didn't know that! Can you share some more?

My understanding is that there are a lot of mast cells in the stomach/GI track and this can be the main problem that some people have with MCAS. If you read Lisa Klimas' story, she had severe GI problems, pain, surgeries, and an ostomy bag for a long time due to MCAS and has a lot of GI problems (which she explains better than I ever could).

 

[ebethc]

My understanding is that there are a lot of mast cells in the stomach/GI track and this can be the main problem that some people have with MCAS. If you read Lisa Klimas' story, she had severe GI problems, pain, surgeries, and an ostomy bag for a long time due to MCAS and has a lot of GI problems (which she explains better than I ever could).

thanks.. I will..

do you know if it causes weight gain, or problems digesting fats?

 

[Gingergrrl]

do you know if it causes weight gain, or problems digesting fats?

Are you talking about IVIG or something else? If so, I am not sure! I definitely weigh more by the end of the third day of the infusions b/c of all the fluid but then it goes back down.

 

[Misfit Toy]

do you know if it causes weight gain, or problems digesting fats?

Do you mean MCAS? I lost so much weight due to it. I went from 115 to 101 pounds. I think it can really screw up your GI tract in a big way.

 

[Misfit Toy]

I have LOW stomach acid which seems contrary to MCAS, which is excessive histamine..

No, it's not contrary. That makes sense. Many with MCAS take digestive enzymes.

 

[ebethc]

Do you mean MCAS? I lost so much weight due to it. I went from 115 to 101 pounds. I think it can really screw up your GI tract in a big way.

when I was a kid, something in my metabolism and digestion shifted, and that's when the fatigue kicked in.. I also gained ~10lbs... to me there's some link...I dont' know if I can't digest my food properly so it just goes straight to weight gain, or what

 

[ebethc]

No, it's not contrary. That makes sense. Many with MCAS take digestive enzymes.

doesn't zantac and tagamet LOWER stomach acid? I need more stomach acid... I take betaine hcl w pepsin

 

[Misfit Toy]

doesn't zantac and tagamet LOWER stomach acid? I need more stomach acid... I take betaine hcl w pepsin

Yes. Yes it does.

 

[Misfit Toy]

I have spent the whole day in bed. Getting up is a feat. I am exhausted but also, I just can't stand or keep myself upright. Some would say, but MT, you have CFS. I have had this for only a year. It started a year ago. It started with MCAS.

I have had a migraine, too. I literally feel like it's too hard for me to stand. I do not understand how I can go from standing, doing, etc...to nothing in one week. I feel like I am sleeping but after I wake up, I am still just fried.

One week ago, I got my haircut, saw that immunologist, I did a lot. I got my period and everything changed. Now, I am exhausted and can't stand.

I have been crying. My mom has no idea what is going on with me and tomorrow is Easter. Or maybe she does know.

I see a neurologist on Tuesday.

 

[ebethc]

Yes. Yes it does.

that's why I'm confused... How can I have MCAS and not have HIGH stomach acid? there are supposedly many, many mast cells in the gut... The only thing that I can say is that my triggers are primarily external.. I'm sensitive to some foods and I avoid them, but it's not by any means my main complaint... I eat a plain diet b/c I just don't have the metabolic energy to process much..

 

[Misfit Toy]

@ebethc -I don't really see the correlation. What difference does it make? MCAS folks do not always have high stomach acid. They put you on Tagamet not because of gastritis, although gastritis is usually caused by low stomach acid, but to stop mast cells....that's it. They don't put you on it for acid, but because it's an antihistamine..period.

 

[ebethc]

@ebethc -I don't really see the correlation. What difference does it make? MCAS folks do not always have high stomach acid. They put you on Tagamet not because of gastritis, although gastritis is usually caused by low stomach acid, but to stop mast cells....that's it. They don't put you on it for acid, but because it's an antihistamine..period.

the point it that histamine begets stomach acid...

Gastrin acts on parietal cells directly and indirectly too, by stimulating the release of histamine. The release of histamine is the most important positive regulation mechanism of the secretion of gastric acid in the stomach. Its release is stimulated by gastrin and acetylcholine and inhibited by somatostatin.

https://en.wikipedia.org/wiki/Gastric_acid

I'll ask the Doc and report back...

 

[Misfit Toy]

Gastrin acts on parietal cells directly and indirectly too, by stimulating the release of histamine. The release of histamine is the most important positive regulation mechanism of the secretion of gastric acid in the stomach. Its release is stimulated by gastrin and acetylcholine and inhibited by somatostatin.

I would post your own post because this post started about IGG. Maybe if you posted a new post, more people would see it and be able to answer. I am too sick myself.

I do know that a nutritionist I dealt with who deals with MCAS says that low stomach acid and MCAS go hand in hand.

 

[ebethc]

I would post your own post because this post started about IGG. Maybe if you posted a new post, more people would see it and be able to answer. I am too sick myself.

I do know that a nutritionist I dealt with who deals with MCAS says that low stomach acid and MCAS go hand in hand.

yeah, I'm just going to ask a doctor about this one.. thanks.

 

[Gingergrrl]

MT, I'm sorry that I got behind in your threads but my dog ended up hurting her back and we were at the emergency vet last night until about 2 am. I do NOT want to sidetrack this thread but I wrote a long update in the "dog bores" thread if you are able to read it when you have time.

I am so tired right now, I can't even think straight but am so hoping that your SCIG works out well (my IVIG is postponed to later next week b/c of the situation with my dog). Thank you so much for the condolence card you sent me, it was beautiful.