MCAS and IGG Treatment-The Journey Begins Again.

[Misfit Toy]

I spoke with Dr. Anne Maitland last Friday and between my MCAS, CVID, T cell defect and lymphopenia, she wants me to give IGG a whirl again. Also, my dysautonomia and POTS. I mentioned that the dysautonomia is even the bigger issue at this point. That I had to go on prednisone (which I am actually doing better with.) I get things done on it.

For those who do not know who Anne Maitland is...she specializes on MCAS, has done many youtube videos at conferences on MCAS on CVID or IGG low subclasses and MCAS. She is in Tarrytown, NY. Right outside of NYC and takes MEDICARE. She actually tries to help the patient. Afrin charges $2,000 per the first two visits and helps patients. Maitland takes insurance..no brainer.

To her, she said that dysautonomia can cause neuropathy, which I had no idea of. I have pins and needles in my feet and she thinks neuropathy can be in the brain, too. I also have Sjogrens so it's hard to know where it's coming from.

Her exact quote that scared me, "Look, you have gotten worse. You are going to continue to get worse unless you treat the CVID."

Hearing that did not make me feel good. My iGG number is 625. It's low, out of range, but it's not low low. Most have it in the 500's and under with CVID.

So, here's where it gets tricky and confusing and where I am angry.

Maitland is in NY. I am in Philadelphia. To travel to her for IGG is not going to happen. She wants to do sub-q with 1 gram twice a week as a start. 1 gram is very small. I am still nervous.

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. This will not help dysautonomia, it doesn't do that." Everything that Anne Maitland has recommended, an MCAS specialist...my doctor poo poo's. My doctor, it seems, was threatened. And MCAS...she doesn't believe in it. Doesn't treat it, etc.

She brought up that I should have a bone marrow test. UM...NO. Then, you should see a hematologist for your lymphocytes. NO. Went to one already. She knows all of this and yet she is recommending it again. You should see a doctor for your larynx since you lose your voice all of the time. You need to see a geneticist.

THAT...I agreed to. Yes, send me to a geneticist. Trying to get any kind of help from my doctor is like pulling teeth. I spent get this....4 hours there yesterday. She is wishy washy and all over the place. Vacillating. Yes, you have it..."yeah, I am not sure you have CVID."

I mean...I felt like I was going to jump out of my skin. Getting up at 6 am (a time I never get up at) driving to the city...solo and then hanging out with a doctor, getting blood work and basically arguing with her the whole time.......

Only for her to say to me, "I will get you IGG." Okay, great. But....keep the hope that Maitland gave to me away from your negativity. Keep it away. Don't say you don't believe it could help with my dysautonomia. Don't say it. Or, my overall immune system.

It's clear I have an immune issue. Low IGA. Low IGG, low lymphocytes and low T cells. You really are going to argue this?

Anyway, she went on to say that she doesn't feel I have CVID, that I actually just have a low subclass issue, which I then went off on her about with her looking at me like.....WOO.

I told her, "I have been seeing you for a year and a few months. You have never offered me anything. Not one thing. Not any medication, you don't believe in MCAS, nothing. Why does Maitland think you would work with her? I will get the IGG from Maitland."

She then says, "No, I'll get it for you." ?????

Anyway, that's it. I am so tired. exhausted. I have bills to do this weekend. I am hoping I can get them done.

I hate doctors. I really do.

I will hopefully be approved and then I will start it in this woman's office. Sigh.

If she fails, if it fails. Off to NY, I will have to go, but as my therapist says, "The idea of you going to NY alone to do this does not make me feel good. You need to be near your home and support."

 

[Wishful]

Yup, some doctors do things for their benefit, not the patient's. They also don't want to deal with anything outside of their comfort zone. I wonder how many of us have basically given up on the medical system. I've certainly given up on expecting help from doctors on ME/CFS issues.

 

[ebethc]

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

ps lecture-y, dismissive doctors who take your time and money but give you nada are the worst... sorry you had that experience.

 

[Learner1]

@Misfit Toy I see a ME/CFS specialist in CA, but I live 700 miles away in another state. My total IgG had sunk to 602, and went to 573 by the time I actually got the IVIG. He has me do a Pneumovax challenge, diagnosed me with CVID, and my insurance quickly approved me for a year's worth of treatment every 3 weeks.

You might find the attached case study to be similar to your situation. The woman in it was getting 1.5g/kg, while he only had me on .75g/of, which is the highest he felt he could get away with for a CVID diagnosis (which usually people get half of that for), although I have autoimmune antibodies and autoimmune MCAS. He said the dose was too high for SCIG.

Instead of my having to travel large distances for treatment, he sent an order to a large nationwide infusion service, Option Care. CVS and Briova are two others.

A nurse comes to my house and stays with me during each treatment, giving me steroids and Benadryl to help and monitoring me closely. The entire process takes about 10 hours. I get saline after the IVIG infusion. Rather than an IV pole, they put it in a shoulder pack with a battery operated pump to control the flow rate, and I can carry it around the house. I spend part of the time sleeping in my own bed and it bears sitying for hours in a recliner, which I've done many times the other things.

The IVIG sets off my MCAS a bit, so I take dexamethasone for 3-4 days after, benadryl, fexofenadine, zantac, curcumin, boswellia, folate and MB12 to quiet the symptoms.

I've gradually improved - my POTS is about 33% of what it was, and I've been able to deal with the infections that were dragging me down, and the MCAS is manageable.

Can you give the case study to Dr. Maitland and ask for IVIG? Then it's only every 3 weeks vs the frequency if SCIG and you can do a higher dose. And insurance companies like home infusions better than hospital services.

I feel safe at home, and they've an anaphylaxis kit at the ready if there ever were an issue. The nurses they have are very experienced.

Glad you're getting some good help finally!

 

[ebethc]

@Learner1

I see a ME/CFS specialist in CA

Is this protocol rx'ed by Dr Kaufman?

He has me do a Pneumovax challenge, diagnosed me with CVID, and my insurance quickly approved me for a year's worth of treatment every 3 weeks.

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

The IVIG sets off my MCAS a bit

Strong reaction? Has the reaction decreased over time, as your body gets used to the IVIG?

I've gradually improved...and I've been able to deal with the infections that were dragging me down, and the MCAS is manageable.

which infections, if you don't mind my asking? I'm curious b/c I get bug after bug...and MCAS flares... I finally killed a throat infection last summer that I had for years, then the norcal fires last fall sent me into a downward spiral.. I can't fend anything off

 

[Learner1]

Is this protocol rx'ed by Dr Kaufman?

Yes

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

For immunodeficiency, insurance companies want to know if your immune system is deficient, i.e., does it respond when presented with something new. There are different types of vaccines that can be used, and each one is a little problematic, but the most common one seems to be the Pneumovax 23.

I was given a before vaccine lab slip and an after, to follow up a month after the first one. The idea is you get the vaccine after the first one, then see what the reaction was a month later.

I was not hospitalized. My second test showed no real difference than the first test.

Strong reaction? Has the reaction decreased over time, as your body gets used to the IVIG?

Yes, its decreased over time, but I still have symptoms.. mainly a stiff neck, headache, and nausea. My symptoms aren't as bad as some people's, but worse than many others. They're predictable, tolerable, and manageable with dexamethasone, MCAS meds, boswellia, curcumin, and B vitamins.

My doctors think I have a stronger reaction as its fighting the autoimmunity I have. My POTS symptoms are about a third of what they were and my fatigue is much better.

 

[Misfit Toy]

@Learner1 -TY...I got your PM but will follow up in a bit. I have had the vaccine challenge 3 times and fail it each and every time. I fail it worse than the CVID patients. Every doctor is shocked at how bad I fail it and yet my iGG numbers are not in the 500's. I had my last vaccine in May. Interestingly enough, I never feel sick from them. So, my numbers last time were awful.

I did IVIG for 6 months in 2013 and 2014 and unfortunately I did not do well on it. After each IVIG treatment, it felt like a bomb had gone off in my body. I know this is rough and many do not like sub-q and many do not like IVIG.

I felt delirious on IVIG. So, Maitland wants me to do small doses as opposed to one big dose to allow my system to tolerate it better. I will have to be on prednisone, lots of fluids.

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

I am supposed to take Zyrtec and Zantac before treatment. Like an hour before. I have to be in touch with Maitland because she may have more exact instructions. This doctor here SUCKS. She will not even prescribe me an antihistamine. She said yesterday, antihistamines are what kills movie stars. ???

My doctors think I have a stronger reaction as its fighting the autoimmunity I have. My POTS symptoms are about a third of what they were and my fatigue is much better.

Ty for this. I think I have a strong reaction because I have Sjogrens which goes batshit. It's an AI disease and it may go nuts because of it. I can't tell you how many people told me, "I have no side effects at all from IGG." What? I would be in bed for a few days and usually have rigors, shakes and all kinds of groovy stuff.

Can you give the case study to Dr. Maitland and ask for IVIG? Then it's only every 3 weeks vs the frequency if SCIG and you can do a higher dose. And insurance companies like home infusions better than hospital services.

See above. Done it before. Had home infusions and hospital infusions. The dose was too much for me. Sub-q may not work either. I am being realistic. I have to go low and slow with most treatments.

 

[Misfit Toy]

@ebethc -Many in this area (doctor wise) do not even know what MCAS is. My cardiologist that I went to who diagnosed me with POTS had no idea what MCAS is. I am not sure where you live, but it's a fairly new thing that many don't know what it is. The only thing that has been thrown my way are antihistamines. That's it.

It's sad. I follow Lisa Klimas and I honestly think she knows more than most doctors. Dr. Castell's is coming here next month for a support group meeting in my area. I am really looking forward to it.

 

[ebethc]

She said yesterday, antihistamines are what kills movie stars. ???

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!!

Hang in there..Low and slow sounds good

 

[ebethc]

@ebethc -Many in this area (doctor wise) do not even know what MCAS is. My cardiologist that I went to who diagnosed me with POTS had no idea what MCAS is. I am not sure where you live, but it's a fairly new thing that many don't know what it is. The only thing that has been thrown my way are antihistamines. That's it.

It's sad. I follow Lisa Klimas and I honestly think she knows more than most doctors. Dr. Castell's is coming here next month for a support group meeting in my area. I am really looking forward to it.

I live in the SF Bay Area.. This week I was thinking about how it's really the "lone wolves" who pioneer... (vs the big organizations)... Didn't Martin Lerner start the whole AV protocol, then pass it to Montoya? And Afrin and Theoharides pioneered mast cell theories and protocols? Kaufman was told about it by a patient who passed him an Afrin study, and he is using it on a lot of CFS'ers (b/c 50% CFS'ers have mast cell issues)... If you can knock out viruses w AV's, Mast Cell dysfunction w IVIG (if you're lucky enough to tolerate it!) and treat SIBO (if applicable) then hopefully it will be easier for doctors to see what's what in CFS patients..... It's like reverse engineering a cascade...

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, so maybe I'll look back and see that it worked out for the best..I've gone as far as I can on my own.. I just need $$ and good insurance again somehow

 

[ebethc]

@Learner1 @Misfit Toy

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

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

thanks.

 

[Misfit Toy]

Theoharides pioneered mast cell theories and protocols? Kaufman was told about it by a patient who passed him an Afrin study, and he is using it on a lot of CFS'ers (b/c 50% CFS'ers have mast cell issues)...

Yes. Theoharides. I go to a urologist who wrote an article with him. Christine Whitmore. She treats my IC and calls me "Little Miss Mast Cell." Now, she does believe in MCAS.

About Walken or Wagner...I just watched a whole series on that. It was absolutely Wagner. He just seems slimy to me. I love Walken, it couldn't be him. And yes, Natalie must have had one too many antihistamines mixed with her alcohol. Too many Xyzals...ha ha. Walken should have predicted the demise of Natalie...I mean after all, he just touched people's hands in the Dead Zone and knew. Maybe he was on IV Benadryl on that boat. Who knows! LOL..okay, totally over the top now.

This doctor's mind goes to places I don't want to go. She wants me to have a bone marrow biopsy. Absolutely not.

I am so sorry about your insurance. I love Mountain View where they are. I lived in SF and miss it everyday. They are expensive. Clearly worth it, but so expensive. I just read an NIH study where it said that IVIG or IGG, LDN and treating the gut helped MCAS and POTS. I did LDN and was so much worse...so it's all a crap shoot.

 

[Misfit Toy]

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

I am not really sure about this in reference to MCAS but I know they are. Subclasses of low IGG...there are several IGG levels . Anyway, many get sick with a subclass deficiency. Many need IGG for this, too. Many have MCAS. Its still considered a primary immune deficiency even if it's a subclass. There are many Primary Immune Deficiency's.

Maitland talks about this on YouTube. If you are up for it, check it out. She is something else. The parallel between MCAS and PID's.

 

[ebethc]

I am not really sure about this in reference to MCAS but I know they are. Subclasses of low IGG...there are several IGG levels . Anyway, many get sick with a subclass deficiency. Many need IGG for this, too. Many have MCAS.

Maitland talks about this on YouTube. If you are up for it, check it out. She is something else.

thanks - I will!

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

 

[Misfit Toy]

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

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. It did work, but honestly, I would not say it did too much otherwise. When I got the next infection, it lasted for 3 months. I kept having to postpone a surgery because of it. I had no energy after I stopped the IVIG. I didn't have a lot on it either though. IVIG made me exhausted. It was too much on me. It stays in your body for 3 weeks. For three weeks I felt awful.

I am not overly hopeful this time around, I am going to give it a shot regardless. I feel that I better try it. Sub-q may help and since 2013, they have come up with new IGG treatments, also Hyviq. That is new and all kinds of new ways of helping PID patients so I need to try at least.

To answer your question...it goes on forever with CVID. I will forever have it. It, they feel, is genetic. I am not sure. I was very sick as a child and was hospitalized for bronchitis and would always turn a cold into a circus. In fact, my numbers are worse now than when I was diagnosed initially.

She told me the other day that IGG subclass deficiency eventually goes on to become CVID. She feels that even if I had subclass deficiency, I would go on to have CVID regardless because I am getting older and the system is weaker.

In many it starts really in their 40's. Mine went full bloom at age 38 and got worse to bring me to seek a diagnosis. I was too sick to not go to a doctor. I was then told, you do not have CFS, you have CVID. Next year I was diagnosed with primary Sjogrens. so, it's been quite fun over here.

 

[ebethc]

About Walken or Wagner...I just watched a whole series on that. It was absolutely Wagner. He just seems slimy to me. I love Walken, it couldn't be him. And yes, Natalie must have had one too many antihistamines mixed with her alcohol. Too many Xyzals...ha ha. Walken should have predicted the demise of Natalie...I mean after all, he just touched people's hands in the Dead Zone and knew. Maybe he was on IV Benadryl on that boat. Who knows! LOL..okay, totally over the top now.

Not at all...I am frequently in self entertainment mode.. and YES re Walken, Wagner and Natalie

This doctor's mind goes to places I don't want to go. She wants me to have a bone marrow biopsy. Absolutely not.

I've read a little about the bone marrow biopsy... why not? super painful? sounds like it... What action would they take from the results?

I just read an NIH study where it said that IVIG or IGG, LDN and treating the gut helped MCAS and POTS. I did LDN and was so much worse...so it's all a crap shoot.

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

LDN helped pain, but made me tired... I don't think messing w opioids is good for me... I get massive rebound pain from opioid drugs, and most just knock me out, so something about them is seriously rejected by my body.. I took a Norco when I broke my foot a few years ago, and it was amazing! I'm so used to being in pain... The nurse aske me if I felt like crying b/c some ppl have that reaction, and I was like, are you kidding? I feel normal for the first time in years.. The next day I paid for it, but it was worth it to get a glimpse of normalcy..

Yes, re crap shoot... all very subjective... I don't have POTS, which would truly put me over the edge, so I'm focused on gut, sinuses and MCAS.

 

[Misfit Toy]

I've read a little about the bone marrow biopsy... why not? super painful? sounds like it... What action would they take from the results?

For people who have weak immune systems, it takes months to feel better. I had two surgeries back to back....no more. Done.

LDN made me so tired. I felt drunk on it and couldn't drive. At all. I was sleeping constantly and then I developed POTS. I couldn't stand on it. I was so sick. No one believed me on the LDN boards. I hated them. They all drill their positive stories down your throat and think you need to suck it up. Many people were doing awful. it wasn't just me.

I was on .05 of LDN and felt drugged. I would wake up in horrible pain. I had migraines everyday. No thanks.

Going to bed...night. Will check in mañana.

 

[ebethc]

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. It did work, but honestly, I would not say it did too much otherwise. When I got the next infection, it lasted for 3 months. I kept having to postpone a surgery because of it. I had no energy after I stopped the IVIG. I didn't have a lot on it either though. IVIG made me exhausted. It was too much on me. It stays in your body for 3 weeks. For three weeks I felt awful.

amazing how your body wants to get back to homeostasis - even if the homeostasis is having an infection.. If it is genetic, is CRISPR an option? it's still so, so new, but you go through so much

I feel like I have 20-100% of the flu all the time... I very rarely feel great, and I get sick all the time.. sometimes I think it's a cfs flare (which could mean mcas or gut dysfunctions, not cold/flu) and other times I am sure it's a virus/flu... I got the flu in january, then got a few shingles on my arm! I recovered, felt great for a couple of weeks, then felt like a massive mcas attack, due to pollen in the air... I tested negative for ALL allergies a few years ago, even though dust/pollen/dander drive me crazy, and forget any kind of particulate matter... it completely flattens me... (SF gets a "B" from the lung assocation, generally good PM for a city... it's mostly concentrated in the winter, though, which is a rough time anyway..)... High humidity makes me useless and low baro pressure can flatten me if I'm already weak... this week has been bad but I'm feeling alot better today... a few weeks ago (btween flu/shingles and MCAS) I felt GREAT... so there are these glimpses which is completely new, as in, I haven't even had glimpses in years and years... I've definitely made progress, but I definitely still way too inconsistent to call myself healthy... We're at the end of winter here, so this is the best time of the year for me, if I can keep my MCAS at bay...

BTW - I have always wondered if I DO have allergies but my immune system is too lame too lame to make an IgE reaction for the test... so I have to ask Dr K when I see him..

I am not overly hopeful this time around, I am going to give it a shot regardless. I feel that I better try it. Sub-q may help and since 2013, they have come up with new IGG treatments, also Hyviq. That is new and all kinds of new ways of helping PID patients so I need to try at least.

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

what is hyvig? I googled and it's something for cows...so I can't find the right thing.

 

[ebethc]

For people who have weak immune systems, it takes months to feel better. I had two surgeries back to back....no more. Done.

LDN made me so tired. I felt drunk on it and couldn't drive. At all. I was sleeping constantly and then I developed POTS. I couldn't stand on it. I was so sick. No one believed me on the LDN boards. I hated them. They all drill their positive stories down your throat and think you need to suck it up. Many people were doing awful. it wasn't just me.

I was on .05 of LDN and felt drugged. I would wake up in horrible pain. I had migraines everyday. No thanks.

Going to bed...night. Will check in mañana.

ughh... no biopsies

LDN bad effects abated when I stopped, thankfully... Opioid receptors are def tied to immunity, though... so it completely makes sense that it could go either way... For example, I've seen studies that proved Exogenous opioids (eg drugs) depress the immune system, whereas endogenous opioids (eg endorphins) boost the immune system... so, it's known that it can go either way.. I read a lot when I researched LDN, but it didn't work for me in the end.. I think MS and fibro ppl like it, so maybe more of a nerve thing than and immune thing??

 

[Misfit Toy]

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

Yes.

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

Never heard of it.