Anyone with immune deficiencies here?
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thanks for suggest
Always open to suggestions. My problem is trying to leave my house at this point. I am such a prisoner her with these gut problems. A day doesn't go by that my gut doesn't cause problems. It doesn't matter what I eat or don't eat. Liquid immodium helps but doesn't stop it. And since I recently had that terrible reaction to antibiotics, I am having to recover from that. I know that may take a long time. Not days, not weeks, but months. I am learning patience. I am open to your idea.
Firstly, I know what you mean- there certainly have been days I’ve had to cancel plans and stay home, close to the bathroom.
As it turns out I know my acupuncturist treats many people with Ulcerative Colitis, other IBDs and autoimmune diseases. I’ve never had to make a mad dash to the bathroom while there but given her clientele and their illnesses, I’ll bet it’s happened. She gives me a bell to ring in case I need something while I’m alone. I mean, people don’t show up because they are feeling great. The actual session is 20 - 30 minutes to get a therapeutic effect. If you can get a quiet 20-30 minutes you can do it uninterrupted. But if you had to get up and move to the bathroom, it probably wouldn’t be a disaster. Not convenient, but not awful either. Or hit the ladies room right before treatment and you’d likely be fine.
I always had more gut issues in the morning so I scheduled any appts in the afternoon, so I had time to patch myself together.
Anyway- just some random thoughts. I hope things let up for you and you are able to look into some alternatives, especially for your pain.
Best wishes,
Carol
As it turns out I know my acupuncturist treats many people with Ulcerative Colitis, other IBDs and autoimmune diseases. I’ve never had to make a mad dash to the bathroom while there but given her clientele and their illnesses, I’ll bet it’s happened. She gives me a bell to ring in case I need something while I’m alone. I mean, people don’t show up because they are feeling great. The actual session is 20 - 30 minutes to get a therapeutic effect. If you can get a quiet 20-30 minutes you can do it uninterrupted. But if you had to get up and move to the bathroom, it probably wouldn’t be a disaster. Not convenient, but not awful either. Or hit the ladies room right before treatment and you’d likely be fine.
I always had more gut issues in the morning so I scheduled any appts in the afternoon, so I had time to patch myself together.
Anyway- just some random thoughts. I hope things let up for you and you are able to look into some alternatives, especially for your pain.
Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
It’s been a while. I’ve been busy laying the last (for now) piece of my puzzle. This piece is UCTD, or more specific anti pm/scl antibodies. So I’m getting quite experienced in autoimmunity; collagenous colitis, diabetes 1, vitiligo, autoimmune hepatitis (very low grade) and UCDT with anti pm/scl. Quite a collection I must say, and with some similarities to Zizzles story.
My autoimmunity origins from both my grandfathers families. Diabetes 1 on one side and celiac disease on the other. The result is that I’m homozygot for a lot of risk genes and heterozygot for even more. Some of the most prominent are homozygot drb1*0301/DQ 2.5 and double deletion of C4a. I think you posted about C4a a couple of years ago, Zizzle?
Anyway, my genetic makeup is highly inflammatory/autoinflammatory. I haven’t had an infection in 30 years except a few very short lived instances of stomack flu. C4a specialize in cleaning out immune complexes. In lupus, which is associated with C4a deletion, the immune system reacts against immune complexes. Luckily, this doesn’t seem to be the case for me.
Your dermatomyositis is a close relative to my anti pm/scl positive UCTD. My antibodies are overlap antibodies by default (polymyositis and scleroderma), and so are several other myositis associated antibodies. Have you considered some kind of overlap syndrome, Zizzle. From experience I know that overlap antibodies can produce an extremely mixed bag of symptoms.
Best Regards,
Tor
My autoimmunity origins from both my grandfathers families. Diabetes 1 on one side and celiac disease on the other. The result is that I’m homozygot for a lot of risk genes and heterozygot for even more. Some of the most prominent are homozygot drb1*0301/DQ 2.5 and double deletion of C4a. I think you posted about C4a a couple of years ago, Zizzle?
Anyway, my genetic makeup is highly inflammatory/autoinflammatory. I haven’t had an infection in 30 years except a few very short lived instances of stomack flu. C4a specialize in cleaning out immune complexes. In lupus, which is associated with C4a deletion, the immune system reacts against immune complexes. Luckily, this doesn’t seem to be the case for me.
Your dermatomyositis is a close relative to my anti pm/scl positive UCTD. My antibodies are overlap antibodies by default (polymyositis and scleroderma), and so are several other myositis associated antibodies. Have you considered some kind of overlap syndrome, Zizzle. From experience I know that overlap antibodies can produce an extremely mixed bag of symptoms.
Best Regards,
Tor
Life's hard and then you die
Another point regarding Zizzles situation (and mine):
My ongoing literature search came back with this brand new article today: https://doi.org/10.1016/j.jaad.2019.03.045
The article finds correlation between dermatomyositis and MC.
This older article points to another such related correlation: https://www.ncbi.nlm.nih.gov/m/pubmed/25036565. It’s well known that myositis and scleroderma frequently overlap and can be caused by the same antibodies.
I think these articles highlights the correlation between MC and the systemic autoimmunity some of us are experiencing.
—Tor
My ongoing literature search came back with this brand new article today: https://doi.org/10.1016/j.jaad.2019.03.045
The article finds correlation between dermatomyositis and MC.
This older article points to another such related correlation: https://www.ncbi.nlm.nih.gov/m/pubmed/25036565. It’s well known that myositis and scleroderma frequently overlap and can be caused by the same antibodies.
I think these articles highlights the correlation between MC and the systemic autoimmunity some of us are experiencing.
—Tor
Life's hard and then you die