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    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.

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MCAS and IGG Treatment-The Journey Begins Again.

Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Gingergrrl -I promise I will read it. I am so sorry. I know she has a bad back. I am so sorry. Just what you don't need and your poor dog.

I am finally up and baking chicken. I need to eat. I took the trash out.

I so hope the Sub-q works, too. Even if it's just for POTS and not MCAS...I will take whatever I can get!

I am glad you got the card. XOXO
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Misfit Toy said:
@Gingergrrl -I promise I will read it. I am so sorry. I know she has a bad back. I am so sorry. Just what you don't need and your poor dog.
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No rush and take care of yourself first.

Misfit Toy said:
I am finally up and baking chicken. I need to eat. I took the trash out.
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:thumbsup:

Misfit Toy said:
I so hope the Sub-q works, too. Even if it's just for POTS and not MCAS...I will take whatever I can get!
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Mine was the opposite and it almost immediately put my MCAS into remission but did nothing for POTS. It is only now (about 18 months of IVIG plus Rituximab) that I am finally having improvements with POTS and can walk farther without wheelchair.

Misfit Toy said:
I am glad you got the card. XOXO
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Yes, thank you so much and thank you @AndyPandy, too, for the beautiful card you sent me. I am hoping your house is okay, Andy, and you are safe from the fires. I know I am in the wrong thread for this and apologize. I've been awake for about 24 hours straight b/c of my dog's injury and other stuff. I will get back on track soon (I hope).
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Misfit Toy said:
@Gingergrrl or @Learner1 -can someone tell me about autoimmune POTS. how am I tested for this? I see the neurologist and need to effectively communicate this and see if she knows how to test for it.

I am so sick with Dysautonomia right now, I need help.
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Hi MT, when you say that you are very sick now with Dysautonomia (which is still my biggest problem), I was wondering if you could describe it b/c I don't want to assume that it affects you in the same way that it affects me. Do you have POTS or very low BP? Prior to my treatments, I was not getting enough blood and oxygen to my heart and lungs when I stood up or walked (so I got tachycardia, shortness of breath and if I pushed it, I got angina/chest pain).

The reason my doctors feel that I have "Autoimmune POTS" is that the cause of my POTS/Dysautonomia is autoimmune mediated (or caused by autoimmunity) which is not the case in all POTS. Emerging research is now showing that there are sub-groups within POTS and one of them is autoimmune (me). I have the beta-adrenergic autoantibodies (on the Cell Trend tests) and overall show autoimmunity on just about everything I am tested for (elevated ANA titers, Hashimoto's, paraneoplastic autoantibodies, anti-muscarinic/cholinergic autoantibodies, etc).

I communicated by e-mail with Dr. Jill Schofield (in Colorado) who is one of the few docs in the world who specializes in this and she felt that my treatment (high dose IVIG & Rituximab) were right on target. I am not her patient but she felt my two doctors were really on track. I'd love to see her but she is not taking new patients and has a two year waiting list (plus she is out of state for me).

Hope this helps and I am probably not explaining things good right now!
 
Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Gingergrrl -it's okay. I wasn't even expecting a response with what is going on!

I have syncope. I feel like my legs will buckle. Very weak in legs. I feel weak. just super weak and like I would prefer sitting to standing. At times I have no choice. I must sit or lay down.

I feel sick from fatigue, dizziness, etc. I have palpitations upon standing but my blood pressure is so low. Like 90/54 and sometimes lower. it's been like this for years. My heart can beat over 100 bpm.

Shortness of breath. I have had this for years but the last year has been out of control.

I can't walk long distances or go for walks. People don't get this.

I just feel exhausted. Bodily exhaustion. I was just washing my face and leaning over the sink caused my legs and knees to want to give out. This happens often. I am so sick of it.

The past 4 days it's been so bad and I am just sleeping. that's all I can do. I went to easter but mostly have been in bed as much as possible. I am too unwell to do or be up.

I will mention autoimmune pots since I have Celiac, Sjogrens, etc. I know sjogrens causes Dysautonomia. It's a main symptom.
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Misfit Toy said:
@Gingergrrl or @Learner1 -can someone tell me about autoimmune POTS. how am I tested for this? I see the neurologist and need to effectively communicate this and see if she knows how to test for it.

I am so sick with Dysautonomia right now, I need help.
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My ME/CFS specialist used this test:

http://www.celltrend.de/cfs-diagnostics.html

The attached articles link the antibodies it finds to autoimmune POTS.

The dysautonomia specialist I saw, a neurologist, was quite interested to learn more after I shared my test results and the research articles and went out of his way to figure out how to do it for some of his other patients.

My ME/CFS specialist felt the antibodies were triggered by my chronic infections which rose up due to my underactive immune system.
 

Attachments

  • Adrenergic antibodies POTS.pdf
    323.2 KB · Views: 10
  • autoimmune basis of POTS - adrenergic antibodies.pdf
    1.1 MB · Views: 9
Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Learner1 -thank you so much learner. I am wondering if the same thing is happening to me. I am coughing and have been unable to breathe. So, it may be similar. I will bring this in tomorrow. TY for educating me. Will let you know what transpires.
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Glad to help. I hope you have a good appointment. You may also want to take this case study, too... I posted it earlier, but you may find it helpful to share with the doctor.

Best wishes...:hug:
 

Attachments

  • POTS MCAS IVIG LDN.pdf
    823 KB · Views: 10
Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Learner1 said:
Glad to help. I hope you have a good appointment. You may also want to take this case study, too... I posted it earlier, but you may find it helpful to share with the doctor.

Best wishes...:hug:
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TY...yes. I wonder if it's an issue if I can't take LDN though. I will have so much to explain including the CVID, The sjogrens and so forth. TY!!! Seriously.
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I'm not too convinced the LDN was the key to that patient's success. Though I have a few more complicating issues, her case is the most similar to mine of any I've seen, and I have been getting a very similar treatment protocol and my POTS symptoms have improved dramatically on it. And she was pretty sick and she improved dramatically. Hope you do, too...
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Learner1 said:
The dysautonomia specialist I saw, a neurologist, was quite interested to learn more after I shared my test results and the research articles and went out of his way to figure out how to do it for some of his other patients.
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Wow, how did you find such a neurologist?!!! I saw three Neuros and finally gave up as none were even remotely willing to help me and could not care less about the autoantibodies once lung cancer and LEMS were ruled out. I had high hopes for the final Neuro b/c she was female and was recommended by my cardio but she had zero interest in anything related to autoantibodies, dysautonomia, etc. She also would not make eye contact with me and would talk to my husband like I was not in the room. Is your Neuro in CA or WA?
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
There are 2 places to get dysautonomia testing in western Washington. Another PR patient had a horrible experience with the University of Washington, so I chose the private neurology practice. He took me seriously and was the most helpful of any MD I've seen locally.
 
Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I went to the neurologist on Tuesday. She said that I have neuropathy in my legs and arms from the skin prick test. I had to have all kinds of testing including the TTT. Honestly, that was easy. My head was just tilted up. I am not sure if it even was the tilt table test. People describe it like it's awful. I was so tired from laying there but pretty much was out of it. The neurologist then said, much of this is coming from the Sjogrens. That and the thyroid removal. She said, "Oh, that will do it, too." But Sjogrens causes all of this.

I don't know how the test went. I see her in two weeks. I liked her. She wants me to go on Mestinon for weakness and low BP. it's for another condition; myasthenia gravis. I do not have that. I am nervous and have not started it.

I have been doing nothing but sleeping so I have decided to lower the prednisone. It is not helping me. It is not giving me any energy at all. I am exhausted on it.

I saw my rheumatologist today and talked about all of this. He said to give mestinon a try but that Northera may be a better option for POTS. He is not happy about me trying IGG again since I did so horribly the last time. I am upset that he is not happy about it. He said, "With you, you need baby doses of whatever you take and I want them to know that." I agree. Too much of anything for me does not work.

I asked for...asked for a compounded small amount of adderol as I am at my wits end and need to get shit done. I feel like I do one thing a day and that is it.

He also wants me to try Medrol in a small amount. I did not do well on a large dose of Medrol. I did horribly. I was crazy on it. So, he said this is a much smaller does. 2 mg. I am still nervous.

My MCAS and itching is in full bloom. I have a rash all over my legs and I just itch. Sit and itch. For me, it happens hours after food.

Honestly, I just feel hopeless. I feel again like having my thyroid out was the worst thing I could have done to myself and it gives me such a feeling of hopelessness because it's done. There is nothing I can do about it. I did it. how was I to know I would become so sick. After my thyroidectomy, it was a year later that I developed MCAS. Not even. That and adrenal exhaustion and POTS. POTS started really bad last summer when I went for a walk and was so out of breath and felt like my knees were going to buckle. I panicked as I have never had anything like that in my life.

And I have no idea if the IGG will work. None. I need some kind of hope though. He does not feel IGG could help my peripheral neuropathy in my feet. It can, but it has to be done by way of IVIG for that to work. Not by way of sub-q. You need a large dose to help the neuropathy and the neurologist agreed.

What Maitland is doing they really don't understand. She is just overall trying to protect my immune system and that is about it. Hoping the MCAS will abate with it a little.

The neurologist also recommended saline by IV. In two weeks I will know more.
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My IVIG flares my MCAS. Both my doctors think its my autoimmunity problems (POTS, MCAS) fighting with it each time, though the general result over the past 8 months with steady improvement - my POTS is much better.

I saw my dysautonomia specialist yesterday..He's having me on propranolol and Mestinon together. Both compounded without my allergens.

I trialled both in the last 8 weeks. Mestinon (pyridostigmine) helped my POTS a little better but spiked my blood pressure to a steady 157/95, while the propranolol helped a little less and lowered my BP to 89/55. So, he's trying a small dose of pyridostigmine with a higher dose of propranolol, to improve my POTS, but keep my BP and heart rate stable.

He explained with my BP and pulse so fast, untreated, my heart isn't filling up with blood, so I get hypoperfusuon in my brain - I fell asleep during a 10 minute tilt table test.

As for the MCAS flare, my ME/CFS specialist has me on Solumedrol the day of, dexamethasone for 4 days after, plus ketotifen, fexofenadine, both compounded, plus Zantac and quercetin. My ND has bumped up my vitamin C, folate, B12, and B5 to help the mast cell chemicals go away faster - all hypoallergenic. And boswellia, curcumin, and help oil to manage the headaches and nausea.

Hang in there, hope you get some relief soon.
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
I'm so sorry that you are having such a rough time right now @Misfit Toy. I read everything that you wrote but will reply in more detail later. Am going to bed soon b/c I have my 2nd day of IVIG tomorrow. For whatever reason, today's went really well with no headache or side effects that normally occur afterwards. BUT I have said this after the first day before, only to be slammed after the second day so I do not want to jinx myself. We'll talk more later :hug:
 
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