Hi Bayhorse! You seem to know a lot about MCS. Perhaps you can guide me! I have been sick/ill going on 14 years. I literally suddenly woke up one morning feeling like I had the flu. It was so severe I was placed on disability with a Lupus label due to my severity of my symptoms. Fast forward. I have MCS, gluten intolerance, sugar alcohol intolerance, food intolerances. Not one doctor can tell me how this occurred. My symptoms are flu like symptoms, brain fog, dry eyes, hives weakness, headache, nausea etc. When these flare ups occur I go to bed for days at a time. My medications for treating these episodes are Advil, pepto bismol, Medrol dose pack and rest. Tysvm!
I was diagnosed with colagenous colitis a few years ago. It is likely associated with the celiac that I have had for 14 years. I had covid in March and had some chest pain; the cardiologist recommended aspirin (covid is associated with clots from stickier blood). It took a week but the aspirin did cause a flare that went away with stopping (no NSAIDs so you might want to use tylenol insead of advil). I control inflammation by diet (no gluten and minimal processed foods), exercize, and managing stress. We all have different levels and types of inflammations and associated symptoms. I think diagnoses are tougher when you have multiple inflammatory diseases (I have at least 4).
Hi There,
First I want to thank you for sharing it helps us all. Personally I have suffered with Colitis my entire life and have taken biologics, prednisone , methotrexate ( I also have RA) anti spasmodics , and probiotics . The only thing that has helped with the constant episodes is taking a pro biotic in addition to a pre bionics. My stool has been normal for months now.
I purchase this product from Amazon. I do get some cramping occasionally but this product has made a huge difference and it is a supplement. It is called Zen Wise.
Hi, Kitty: My understanding is that Entyvio works specifically in the gut; it's not a full body immune suppressant like Remicade. I was on Remicade for 13 years, but had to go off of it because I developed lupus, though not from the Remicade. (My immune system system is out of whack and did that all on its own.) I did fairly well on the Remicade and wonder what happened with you, as you said you didn't do well.
In any event, I have had no discernible side effects so far from the Entyvio. I have many illnesses -- lupus, celiac sprue, UC, heart failure, chronic active Epstein Barr/chronic fatigue syndrome, and osteoporosis -- and I am extremely chemical/fragrance/drug sensitive. Perhaps I've been lucky that the IV drugs have worked for my UC; I was hospitalized when I was on steroids, the colitis was out of control.
Not meaning to push at all, but still wonder if you should at least talk to your gastro about the Entyvio, as its mechanism apparently is different than the Remicade's. I believe it also works differently than Budesonide. Is it the brain aneurysm that causes your concern about Entyvio side effects?
Hi..yes it is the brain aneurysm that causes the concern for me ..plus I have heard all the horror stories from all the people that have lost their hair after having Entyvio..I have had a lot of hair come out from my long covid alone. I was also hospitalized twice from the steroids, and 23 years ago I was on prednisone and wound up getting a severe infection that was resistant to drugs except for vancomycin so that was another week in the hospital and left with a port and had to give myself vancomycin twice a day IV for eight weeks. I proved I can not be on steroids. I got very ill from the Remicade , the first time I had it..I had a severe reaction to the drug while it was running in. Wishing you the best..I do so much better on the weekends. The physical work that I do is causing my gut to rev up. When I do not work on the weekend , I can live a normal life. Thank you for all your notes. Wishing you the best also..Sincerely, kitty2
I have combined the Institute of Functional Medicine elimination diet with the Monash Low Fodmap diet, plus only low histamine producing foods since May 10th. It is now June 16th. I will continue for 3 more weeks before reintroducing food one at a time. I am experimenting on myself. Two years ago, I became a Functional Medicine Coach. I wanted to apply this medical approach and knowledge to see if it worked for me. If it will, I will have my own personal experience to share. 2 years ago, my BMI was in the morbidly obese category, Now I'm in the obese category and hopefully this year, I will be in the overweight category. I had a colonoscopy and endoscopy this week and found out I have a redundant/tortuous colon. I was in the hospital, under anesthesia for the procedure. My gastritis symptoms have gone down to mild (no medication nec,) and I'm waiting for biopsies of both ends. After 4 weeks on these combined diets, I still experience extreme constipation with no urge. I'm only in the beginning phase of elimination. The only supplements I'm takinh are D3 50,000 IU 1x wk (until my D level is around 60) and Digest Tone (Triphala and Rose, an Ayurvedic px). I get a Xolair injection (a monoclonal antibody that inhibits IgE production) eve. 2 mos. for an autoimmune condition. Nothing has been successful for the constipation. I welcome all comments and ideas.
I am a concerned parent of my son B-rad. He has always had difficulty to speak for himself. He was seen by an allergy specialist and a general practitioner. Both look at him like nothings wrong. Bloodwork was for allergies. Which he really has none. He looks healthy except when he balloons out with swelling and hives.
@klpatrick Your son looks quite miserable with all of this! Have the hive outbreaks been going on for a long time? Does he feel sick when he breaks out? Did he have hives when he saw the allergist? I also think he should have a better work up by a NEW allergist. Do you have a major medical center or university medical center near you? You might call and explain what you son has and ask for help. That’s what I had to do when I got this autoimmune disease. No one knew what was happening and i was getting sicker by the day. My husband called the university hospital, in the next city, and asked for help. A neuro-immunologist recognized the lesions on my brain and has been treating me for 6 years.
If you haven’t already, you might want ask your same question in the Skin Health Support Group. I’m sorry, I couldn’t get the link to work.
Will you call to see what help you can get?
I have combined the Institute of Functional Medicine elimination diet with the Monash Low Fodmap diet, plus only low histamine producing foods since May 10th. It is now June 16th. I will continue for 3 more weeks before reintroducing food one at a time. I am experimenting on myself. Two years ago, I became a Functional Medicine Coach. I wanted to apply this medical approach and knowledge to see if it worked for me. If it will, I will have my own personal experience to share. 2 years ago, my BMI was in the morbidly obese category, Now I'm in the obese category and hopefully this year, I will be in the overweight category. I had a colonoscopy and endoscopy this week and found out I have a redundant/tortuous colon. I was in the hospital, under anesthesia for the procedure. My gastritis symptoms have gone down to mild (no medication nec,) and I'm waiting for biopsies of both ends. After 4 weeks on these combined diets, I still experience extreme constipation with no urge. I'm only in the beginning phase of elimination. The only supplements I'm takinh are D3 50,000 IU 1x wk (until my D level is around 60) and Digest Tone (Triphala and Rose, an Ayurvedic px). I get a Xolair injection (a monoclonal antibody that inhibits IgE production) eve. 2 mos. for an autoimmune condition. Nothing has been successful for the constipation. I welcome all comments and ideas.
dahk, With you being a functional medicine coach, I take it that you want to go the natural route. I truly respect that. I know that what you have is much worse than my issue, but, maybe something I hit upon with you will help. I tried everything natural for IBS-C (IBS constipation) and nothing worked. Fodmap diet, eating clean (actually made it worse!), gluten free (no change), can't do much natural fiber such as Psyllium & flaxseed, drinking more water, moving more, Kefir, very good probiotics, prune juice, Miralax (trial & error with dosage) etc., Iceberg lettuce is one of my worst culbrits and the preservatives added to salad bars cause severe cramping. Only occasionally do I need to take Milk of Magnesia. I went on Linzess 72 mcg for IBS-C several years and it is the best thing I ever did! I take Bentyl for IBS for colon spasms...works wonders. I realize this is not what you have been diagnosed with, but, just some thoughts. I empathize. It's miserable. Go figure, but sometimes eating occasional junk from a fastfood restaurant helps! I truly wonder if there is a genetic connection as my mom & sister have IBS-C as well. I'm hopeful you will get better and find what works for you. Bless you!
Hi Bayhorse! You seem to know a lot about MCS. Perhaps you can guide me! I have been sick/ill going on 14 years. I literally suddenly woke up one morning feeling like I had the flu. It was so severe I was placed on disability with a Lupus label due to my severity of my symptoms. Fast forward. I have MCS, gluten intolerance, sugar alcohol intolerance, food intolerances. Not one doctor can tell me how this occurred. My symptoms are flu like symptoms, brain fog, dry eyes, hives weakness, headache, nausea etc. When these flare ups occur I go to bed for days at a time. My medications for treating these episodes are Advil, pepto bismol, Medrol dose pack and rest. Tysvm!
I take a prescription drug for my lupus. I'm in the car can't wait to remember the name of it. It's the one they said would treat covid-19 when it first started period enter someone would know what that pill was I take a pill and a half every day and it is for my lupus
I hope you can understand that I'm talking into my phone I was told my lupus could attack my organs not everything at once. I'm thinking that one of your organs is being attacked and that's why you feel so bad all over I'm just asking good luck hope you feel better
I take a prescription drug for my lupus. I'm in the car can't wait to remember the name of it. It's the one they said would treat covid-19 when it first started period enter someone would know what that pill was I take a pill and a half every day and it is for my lupus
I did an elimination diet and could not get back on many foods without symptoms. It was a surprise. I no longer have dairy, gluten, nuts, salmon, avocado, chocolate. It did help with some of my neurological sensations.
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I was diagnosed with colagenous colitis a few years ago. It is likely associated with the celiac that I have had for 14 years. I had covid in March and had some chest pain; the cardiologist recommended aspirin (covid is associated with clots from stickier blood). It took a week but the aspirin did cause a flare that went away with stopping (no NSAIDs so you might want to use tylenol insead of advil). I control inflammation by diet (no gluten and minimal processed foods), exercize, and managing stress. We all have different levels and types of inflammations and associated symptoms. I think diagnoses are tougher when you have multiple inflammatory diseases (I have at least 4).
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1 ReactionHi There,
First I want to thank you for sharing it helps us all. Personally I have suffered with Colitis my entire life and have taken biologics, prednisone , methotrexate ( I also have RA) anti spasmodics , and probiotics . The only thing that has helped with the constant episodes is taking a pro biotic in addition to a pre bionics. My stool has been normal for months now.
I purchase this product from Amazon. I do get some cramping occasionally but this product has made a huge difference and it is a supplement. It is called Zen Wise.
-
Like -
Helpful -
Hug
1 ReactionHi..yes it is the brain aneurysm that causes the concern for me ..plus I have heard all the horror stories from all the people that have lost their hair after having Entyvio..I have had a lot of hair come out from my long covid alone. I was also hospitalized twice from the steroids, and 23 years ago I was on prednisone and wound up getting a severe infection that was resistant to drugs except for vancomycin so that was another week in the hospital and left with a port and had to give myself vancomycin twice a day IV for eight weeks. I proved I can not be on steroids. I got very ill from the Remicade , the first time I had it..I had a severe reaction to the drug while it was running in. Wishing you the best..I do so much better on the weekends. The physical work that I do is causing my gut to rev up. When I do not work on the weekend , I can live a normal life. Thank you for all your notes. Wishing you the best also..Sincerely, kitty2
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Like -
Helpful -
Hug
1 ReactionI have combined the Institute of Functional Medicine elimination diet with the Monash Low Fodmap diet, plus only low histamine producing foods since May 10th. It is now June 16th. I will continue for 3 more weeks before reintroducing food one at a time. I am experimenting on myself. Two years ago, I became a Functional Medicine Coach. I wanted to apply this medical approach and knowledge to see if it worked for me. If it will, I will have my own personal experience to share. 2 years ago, my BMI was in the morbidly obese category, Now I'm in the obese category and hopefully this year, I will be in the overweight category. I had a colonoscopy and endoscopy this week and found out I have a redundant/tortuous colon. I was in the hospital, under anesthesia for the procedure. My gastritis symptoms have gone down to mild (no medication nec,) and I'm waiting for biopsies of both ends. After 4 weeks on these combined diets, I still experience extreme constipation with no urge. I'm only in the beginning phase of elimination. The only supplements I'm takinh are D3 50,000 IU 1x wk (until my D level is around 60) and Digest Tone (Triphala and Rose, an Ayurvedic px). I get a Xolair injection (a monoclonal antibody that inhibits IgE production) eve. 2 mos. for an autoimmune condition. Nothing has been successful for the constipation. I welcome all comments and ideas.
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Like -
Helpful -
Hug
3 Reactions@klpatrick Your son looks quite miserable with all of this! Have the hive outbreaks been going on for a long time? Does he feel sick when he breaks out? Did he have hives when he saw the allergist? I also think he should have a better work up by a NEW allergist. Do you have a major medical center or university medical center near you? You might call and explain what you son has and ask for help. That’s what I had to do when I got this autoimmune disease. No one knew what was happening and i was getting sicker by the day. My husband called the university hospital, in the next city, and asked for help. A neuro-immunologist recognized the lesions on my brain and has been treating me for 6 years.
If you haven’t already, you might want ask your same question in the Skin Health Support Group. I’m sorry, I couldn’t get the link to work.
Will you call to see what help you can get?
-
Like -
Helpful -
Hug
1 Reactiondahk, With you being a functional medicine coach, I take it that you want to go the natural route. I truly respect that. I know that what you have is much worse than my issue, but, maybe something I hit upon with you will help. I tried everything natural for IBS-C (IBS constipation) and nothing worked. Fodmap diet, eating clean (actually made it worse!), gluten free (no change), can't do much natural fiber such as Psyllium & flaxseed, drinking more water, moving more, Kefir, very good probiotics, prune juice, Miralax (trial & error with dosage) etc., Iceberg lettuce is one of my worst culbrits and the preservatives added to salad bars cause severe cramping. Only occasionally do I need to take Milk of Magnesia. I went on Linzess 72 mcg for IBS-C several years and it is the best thing I ever did! I take Bentyl for IBS for colon spasms...works wonders. I realize this is not what you have been diagnosed with, but, just some thoughts. I empathize. It's miserable. Go figure, but sometimes eating occasional junk from a fastfood restaurant helps! I truly wonder if there is a genetic connection as my mom & sister have IBS-C as well. I'm hopeful you will get better and find what works for you. Bless you!
-
Like -
Helpful -
Hug
1 ReactionI take a prescription drug for my lupus. I'm in the car can't wait to remember the name of it. It's the one they said would treat covid-19 when it first started period enter someone would know what that pill was I take a pill and a half every day and it is for my lupus
I hope you can understand that I'm talking into my phone I was told my lupus could attack my organs not everything at once. I'm thinking that one of your organs is being attacked and that's why you feel so bad all over I'm just asking good luck hope you feel better
I take Plaquenil too but still have issues with my health.
Were the symptoms obvious when you reintroduced the foods?