MCAS and IGG Treatment-The Journey Begins Again.

[Learner1]

How do IG subclasses add insight for diagnosis? Are the relevant?

You know what part of your immunoglobulins aren't working. A lot of PWME have low IgG1 and 3. There are other patterns. Low subclasses can qualify you for IVIG. You also want to know about IgA, as that could impact your IVIG prescription.

what are MCAS autoantibodies? I didn't know there were specific AA's for MCAS.

Rather than plunge right into a bone biopsy, my doctor did a KIT mutation test, which most people with mast cell disease have. Mine was negative. My doctor said that I, like most of his other MCAS patients, likely had an autoimmune version. He didn't mention specific antibodies.

does getting a year or two of ivig infusions fix you for at least a FEW years? Does it just go on forever?

He told me to look at it as a 6 month project and then we would see. We don't know if I was born with a flawed immune system or whether chemo therapy ruined mine.

At 6 months, we discussed stopping and seeing or doubling down. As its helping my POTS and I did worse when I spaced them apart, we decided to pursue doubling down.

But, I need more lab work to show more evidence of autoimmunity to justify the higher dose.

IVIG = intravenous immunoglobulins, but what is IGG? just a specific immunoglobulin injected vs several?

They're the same.

If it is genetic, is CRISPR an option? it's still so, so new, but you go through so much

The University of Washington has pioneered gene editing for young children with severe combined immune deficiency. It is possible, but I'd really look into the risks before going that route.

 

[ebethc]

But, I need more lab work to show more evidence of autoimmunity to justify the higher dose.

is that for insurance reasons, or solely to inform the doc how much to increase the dose?

 

[Learner1]

The doc knows what to do, he just needs to.find a way to convince the insurance to say yes to his plan. He's pretty good at knowing what he needs to do.

 

[ebethc]

@Learner1

one last question: do the IVIG nurses come any day of the week, including weekends? looooong infusion times

 

[Learner1]

Yes, they do. Sick people need infusions 7 days a week.

 

[Misfit Toy]

one last question: do the IVIG nurses come any day of the week, including weekends? looooong infusion times

Yes. Some nurses are with the patient for a few days or I should say another nurse comes in.

 

[Misfit Toy]

Rather than plunge right into a bone biopsy, my doctor did a KIT mutation test, which most people with mast cell disease have. Mine was negative. My doctor said that I, like most of his other MCAS patients, likely had an autoimmune version. He didn't mention specific antibodies.

When you say autoimmune, do you mean PID or as in Lupus? I wonder sometimes if my POTS comes from the Sjogrens or the CVID. Its so hard to know.

Chemo will do it. Will make you have low IGG for sure.

I am still wondering if EBV and years of fighting that brought on CVID, but I had it when I was a kid. I remember so well being in an oxygen tent at age 14. I was in there for a week sequestered from any other patients in this huge room. The next year I had strep throat for 6 months. Six months of rotating antibiotics and getting nowhere.

Then polyps in my nose and allergy shots every week. I was always a sick kid. A sick kid who was so vibrant and loved playing in spite of it all.

Anyway, thank you for conversing Lerner. I wanted to tell you I am only on 3 MG of prednisone so I am not sure if it will do damage to my bones, but I almost don't care. I have adrenal insufficiency and I can't take HC so prednisone is the only option. I was not functioning at all before prednisone. I collapsed after Christmas and my mom's death.

I know this, I have gained 12 pounds on it. I am slightly happy about this as I looked emaciated prior to.

 

[Learner1]

There are a lot of different autoimmune mechanisms. He didn't tell me which antibody and testing would be useless as I'm on IVIG.

Gingergrrl would be the best example of autoimmune MCAS..she didn't have it, but once she got it, it almost killed her, nut now with the IVIG and Rituximab, Sound a like Its almost gone.

My case is milder than hers, but without the gene mutation, it looks likely its autoimmune. My POTS is - we found the antibodies there...

Why can't you take HC? I have to have it compounded due to my allergies...

And I haven't completely followed your story... Did you rehab your microbiome after the antibiotics?

 

[Misfit Toy]

@Learner1 -I can't take HC because it makes me nuts. I have the prednisone compounded also.

I treated my but with probiotics...every day. I have no SIBO or leaky gut according to tests. makes no sense to me as I am sick 30 years.

Yes, @Gingergrrl -this is what is going on with the MCAS and IGG. Do not read if you are not able to right now. I just wanted to let you know that yes...this is what is going on...post above. But...do not feel that you have to read.

 

[Learner1]

But have you had a DNA stool test to look for microbiome diversity, unhappy bacteria, lack of good ones, fungi, and/or parasites, any of which can impact nutrient absorption, metabolism of biochemicals, immune function, neurotransmitter production. And bacterial translocation can cause issues, too...

 

[Misfit Toy]

Hey @Learner1 -I don't go to the same doctor as you, nor do I have the money for all of these tests. To be honest, I am sick, tired, dealing with so many ailments...thyroid, sjogrens, and now the latest...adrenal insufficiency with my mom dying in the fall. I really don't have the energy for any more tests at the present time. my life revolves around doctors, tests, etc.

I am going to a geneticist next, my rheumatologist, neurologist, etc. I am not too concerned about my gut at present. I do not have diarrhea, or anything crazy going on.

I am more concerned about how after I had an epidural, my adrenals failed afterwards. I am trying to get back on track with that. I do not do well with a ton of meds, supplements, etc.

I am glad you have a great doctor in CA. According to the two tests I had...I have no parasites, fungi etc.

I just did a neurological test for neurotransmitters, blood work every week.

I am tired of the never ending search and much of it never led me to anywhere.

 

[Learner1]

I hear your frustration. Unfortunately, it is going to be very difficult to improve if your gut is compromised. It is a foundation for health.

https://www.sciencedaily.com/releases/2017/04/170426092351.htm

https://solvecfs.org/gut-microbiome-and-mecfs-research-study-conclusion/

https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-016-0171-4

https://link.springer.com/article/10.1007/s11306-016-1145-z

https://cfsremission.com/treatment/quick-start/

UBiome has a program which will bill insurance for their DNA based stool test. The enhanced version does fungi and parasites.

I'm tired of all this, too, but a geneticist, rheumatologist, etc. are unlikely to delve into your microbiome, however, there are resources at Columbia and Cornell near you that may be able to help.

Best wishes to you.

 

[Gingergrrl]

Yes, @Gingergrrl -this is what is going on with the MCAS and IGG. Do not read if you are not able to right now. I just wanted to let you know that yes...this is what is going on...post above. But...do not feel that you have to read.

Thanks for tagging me and I will definitely go back and read your thread hopefully later tonight. I am preparing all of my stuff for taxes today b/c I am meeting w/an accountant next week and need to be ready for the appt. I should be able to finish my part today if I can force myself to stay off the internet! But once I'm done, I'll be back and will read this thread and some others that I've missed.

Edit: MT, I'm so sorry I was not able to get back to read this thread today. The last few days have been busy for me and I had my step-daughter overnight, and took my dog to her follow-up appt at the vet, and then had to force myself to prepare my tax stuff for accountant. I don't want to take your thread off-track but wanted you to know I am thinking of you and planning to read it and reply as soon as I can.

 

[Gingergrrl]

@Misfit Toy Sorry for my long delay and I just read your thread... We will fully catch up some day soon.

Right outside of NYC and takes MEDICARE. She actually tries to help the patient.

That is great news and I have always heard good things about her.

I saw the doctor who she knows in Philly who could help me get it, etc. This doctor told me to go see Anne. I saw her yesterday. The appointment was awful. "This will not help your MCAS. I have never heard of that.

IVIG put my MCAS into complete remission and in July it will be 2 yrs. Most doctors do not even know that MCAS exists let alone "outside of the box" ways to treat it. Although my IVIG was for autoimmunity (not immune deficiency) so I do not know if it would be the same.

@Misfit Toy why does your doctor not believe in MCAS?

Doctors are not taught about MCAS in medical school and most have either never heard of it or think it is a fake disease or of psychological origin. If anything, they know of mastocytosis (too many mast cells/cancer) versus MCAS which is correct number of mast cells but they are "behaving badly".

Can you describe the Pneumovax challenge? do you have to be hospitialized? Does it make you sick?

I did not do the Pneumovax challenge since we were asking for high dose IVIG for autoimmunity and it would not have been relevant. My doctor also felt that vaccines would not be safe for me. But I know people who have done it and you do not have to be hospitalized and mixed outcomes re: if it made them sick. I did not do it.

I did IVIG with two bags of saline, Benadryl in IV and you name it...throat closed up on last time with Gammaguard.

Can you remind me if you have been tested for autoantibodies against IgA? If you have them, this greatly increases your chances of having an allergic reaction to IVIG and would help decide which brand to try (a brand with low IgA content).

I am supposed to take Zyrtec and Zantac before treatment.

I take Atarax, Pepcid, and Tylenol as pre-meds for IVIG but everyone is different.

I follow Lisa Klimas and I honestly think she knows more than most doctors.

She does. Without a shred of doubt, if I need info on an MCAS issue, I look to Lisa Klimas. She is the world expert IMO (along with Afrin) and is not only a severe patient but is a scientist.

Your whole IVIG saga (past and present) made me so bummed for you... then I got to this line and burst out laughing! You really need a twisted sense of humor to get through all this... Did Robert Wagner push Natalie Wood off that boat in Catalina? Or, was it Christopher Walken? Nope! It was the anti-histamines!!

This made me laugh, too. Thank you guys

I had amazing insurance and lost it just as I discovered Dr K, so I couldn't afford to see him.. In the mean time, he's been starting to use IVIG and has experience

He has a lot of experience with IVIG and I trust him completely on this issue.

what are MCAS autoantibodies? I didn't know there were specific AA's for MCAS.

There are no specific autoantibodies for MCAS. There are tests like Histamine, Prostaglandins, Tryptase, etc, but there is no autoantibody test and it remains unproven if it is an autoimmune disease.

She treats my IC and calls me "Little Miss Mast Cell."

Can I call you that now?

There is a theory that getting IGG does help you even after you stop, but not for everyone. After I have IVIG, I didn't have an infection for a year eight months. They feel that sometimes it kicks the immune system to work.

My MCAS doctor said it can re-set the immune system (even after you have stopped it) and I am hoping this will be what happens in my case. My next IVIG is next week (Mon & Tues) and I have now tapered down to a 2-day cycle (from a 3-day cycle).

I am not overly hopeful this time around, I am going to give it a shot regardless.

Good for you and I think it is worth a try.

amazing how your body wants to get back to homeostasis - even if the homeostasis is having an infection.

I agree and I think it is the same with autoimmunity and dysautonomia and I am hoping my treatments will have broken that incorrect homeostasis (but time will tell).

So, still not clear on IGG vs IVIG.. By IGG, do you mean the product that is injected during the IVIG process?

IGG is the type of immunoglobulin and IVIG is the method of administering it (through an IV). Vs. SCIG it is administered SubQ.

Hey @Learner1 -I don't go to the same doctor as you, nor do I have the money for all of these tests.

I think Learner goes to two doctors (correct me if I am wrong @Learner1) and one is the same doctor as me but the other is a local naturopath and the microbiome tests that she is mentioning are from her naturopath (and not from our doctor) b/c I have not done any microbiome tests and it is not a focus of my treatment. I did do a SIBO test and a few other tests in 2014 with an integrative gastro doctor (who I only saw briefly) which were negative.

 

[Learner1]

I think Learner goes to two doctors (correct me if I am wrong @Learner1) and one is the same doctor as me but the other is a local naturopath and the microbiome tests that she is mentioning are from her naturopath (and not from our doctor) b/c I have not done any microbiome tests and it is not a focus of my treatment. I did do a SIBO test and a few other tests in 2014 with an integrative gastro doctor (who I only saw briefly) which were negative.

Both my ME/CFS doctor and my naturopath, who practices functional medicine think the microbiome is important.

My ME/CFS doctor had me do a SIBO test, and he told me most of his patients have it.

My naturopath looks more deeply into gut issues. Right now, after the 4 months of IV antibiotics, my gut has only 17% diversity and I'm missing many strains of bacteria, including many that were low in the ME/CFS microbiome studies. I'm taking a hefty probiotic, along with Klaire Labs GOS, Thorne Perma Clear and Thorne FiberMend, which have been helpful in restoring my microbiome before.

The other issue with a disturbed microbiome is that one ends up.with nutrient deficiencies, which can promote or maintain ME/CFS symptoms.

 

[ebethc]

@Learner1
Agreed that gut is key... I'm doubling down on gut and MCAS because those 2 things are the no brainers for me, and everything else is so vague.. Infections, viruses and swollen lymph nodes were knocked out last year...


@Gingergrrl @Misfit Toy
Agreed re Lisa Klimas...Thanks for reminding me about her site


BTW - this is a handy reference from Afrin, et. al on MCAD/S symptoms, co-conditions, and treatment... The tables make it easy to skim:

https://jhoonline.biomedcentral.com/articles/10.1186/1756-8722-4-10

 

[Gingergrrl]

Agreed that gut is key... I'm doubling down on gut and MCAS because those 2 things are the no brainers for me

Do you have POTS or autonomic problems?

 

[ebethc]

Do you have POTS or autonomic problems?

no and yes

 

[alex3619]

Trying to get any kind of help from my doctor is like pulling teeth.

Sadly this is a common experience. Our problems are so out of the box that standard medical responses fail. Even with speciality treatments its often the case the evidence is weak, but even there you cannot know if you don't try it. Sometimes its less about if the treatment is effective, than about finding cause for hope. You can do nothing, resign to your illness, or you can try something based on the best advice you can get.

I hope all this works out for you.

 

[Gingergrrl]

You can do nothing, resign to your illness, or you can try something based on the best advice you can get. I hope all this works out for you.

I agree with everything you said, Alex, and I like how you phrased it. My own way of dealing with an illness that (most) doctors do not understand is to keep trying things based on the best advice and research that I can get. I know it is all a crap-shoot with no guarantees but for me it has been worth it.

I am so hoping that the SCIG works out for you @Misfit Toy (which you already know)! I am rooting for you and am one of your biggest cheerleaders