[Aj...] Posted February 2, 2021 Share Posted February 2, 2021 I just spoke to endocrinologist about MCAS and other issues including EDS, ME/CFS etc I asked him about COVID vaccine. I know a lot of us have sensitivities and mast cell issues caused by withdrawal. He says to not have the Pfizer vaccine and to ask Dr to inject small amount of Oxford/AstraZeneca one under skin first to see if react. Hope that is helpful to others. Link to comment Share on other sites More sharing options...
[se...] Posted February 10, 2021 Share Posted February 10, 2021 Ajusta, Do you plan to do this? If so, can you let me know how it goes? Thanks for posting! Link to comment Share on other sites More sharing options...
[Ma...] Posted February 10, 2021 Share Posted February 10, 2021 The ingredient on which you might react is PEG 2000. (Polyethylenglycole. The "2000" shows the size of the particles). If you are allergic to PEG in cosmetics you would react on PEG 2000, too. Also, if you have an allergy on Polysorbate 80, which is often used in food preservation for example, you are likely to be allergic on PEG as well. It is a cross reaction. The problem is, in case you are allergic, even the test on or under the skin could have an extreme reaction so I will not test it on my skin. Maybe they will find the option to take the blood and test the blood for a reaction, but as far as I know this option is not developed yet. I do not have the choice if I want to be vaccinated I need to take what I get. I still have not made a final decision.. but I will tell the doctors and nurses to monitor me longer than 15 minutes and to have everything prepared. Adrenaline and so on. This is all so exhausting. Link to comment Share on other sites More sharing options...
[se...] Posted February 10, 2021 Share Posted February 10, 2021 Wow, this is all ver interesting and overwhelming. I have no idea if I am allergic to those mentioned. I am hoping all goes well for you. You are a very strong person, I am sending positive energy and prayers. Link to comment Share on other sites More sharing options...
Guest [...] Posted February 10, 2021 Share Posted February 10, 2021 I have spoken to one of the top MCAS specialists in Canada and he said it was fine to take any of the vaccines if you have MCAS! It needs to be done in a hospital setting, but you will not be harmed by it! Very few people are anaphylactic to the ingredients and he's still telling his patients to get it! A ton of people on my MCAS Canadian FB group have gotten it, no problem and they are anaphylactic to everything!! Just my two cents! We have hardly any vaccines in Canada, so my turn for the vaccine won't be for a while! I know it's a personal decision for most, but an allergy, is sometimes just an allergy, you won't die from it - that's what his point was, pre-medicate and you should be fine. There are hospitals here that are not letting patients with allergies get it, my Dr is so furious at that, as the science doesn't warrant that type of warning etc. Winnie Link to comment Share on other sites More sharing options...
[se...] Posted February 11, 2021 Share Posted February 11, 2021 Thank you Winnie! So good to know! Link to comment Share on other sites More sharing options...
Guest [...] Posted February 11, 2021 Share Posted February 11, 2021 No problem, I just listened to his podcast on it and he basically said even if you have an anaphylaxis allergy to the ingredients, they would just give you an epi pen and monitor you. No one to date has died from this, but you could very well die from covid. Very personal, I have kids that go to school 2 days per week. If you live without kids going to school and isolate yourself more and be careful, then maybe that's a choice too. But my feeling is that this virus will be with us forever now, so we all better think hard about getting vaccinated! again, only my personal opinion, as someone who talked to another MCAS specialist yesterday (different one from the podcast) and she trained with the top MCAS specialist in the States, said that it was safe to get, in a setting where you are monitored for 30 min following. Winnie Link to comment Share on other sites More sharing options...
[tr...] Posted February 11, 2021 Share Posted February 11, 2021 I just spoke to endocrinologist about MCAS and other issues including EDS, ME/CFS etc I asked him about COVID vaccine. I know a lot of us have sensitivities and mast cell issues caused by withdrawal. He says to not have the Pfizer vaccine and to ask Dr to inject small amount of Oxford/AstraZeneca one under skin first to see if react. Hope that is helpful to others. I would not agree that a lot of people have mast cell issues caused by withdrawal, so lets not make a sweeping comment in regards to that. I am very sorry if your mast cell issue was likely triggered by benzos, I understand it is a challenging condition to have. Any further comment eluding to mast cells in relationship to benzo use needs to have documentation/citation please. Thanks for understanding. Link to comment Share on other sites More sharing options...
[Ma...] Posted February 11, 2021 Share Posted February 11, 2021 I just spoke to endocrinologist about MCAS and other issues including EDS, ME/CFS etc I asked him about COVID vaccine. I know a lot of us have sensitivities and mast cell issues caused by withdrawal. He says to not have the Pfizer vaccine and to ask Dr to inject small amount of Oxford/AstraZeneca one under skin first to see if react. Hope that is helpful to others. I would not agree that a lot of people have mast cell issues caused by withdrawal, so lets not make a sweeping comment in regards to that. I am very sorry if your mast cell issue was likely triggered by benzos, I understand it is a challenging condition to have. Any further comment eluding to mast cells in relationship to benzo use needs to have documentation/citation please. Thanks for understanding. I disagree with everything that was said in the first post. Just an anecdote without any evidence. Link to comment Share on other sites More sharing options...
[Aj...] Posted February 12, 2021 Author Share Posted February 12, 2021 I just spoke to endocrinologist about MCAS and other issues including EDS, ME/CFS etc I asked him about COVID vaccine. I know a lot of us have sensitivities and mast cell issues caused by withdrawal. He says to not have the Pfizer vaccine and to ask Dr to inject small amount of Oxford/AstraZeneca one under skin first to see if react. Hope that is helpful to others. I would not agree that a lot of people have mast cell issues caused by withdrawal, so lets not make a sweeping comment in regards to that. I am very sorry if your mast cell issue was likely triggered by benzos, I understand it is a challenging condition to have. Any further comment eluding to mast cells in relationship to benzo use needs to have documentation/citation please. Thanks for understanding. I disagree with everything that was said in the first post. Just an anecdote without any evidence. You can disagree all you like. Just saying what my endo has recommended so others who are thinking of not having the vaccine are aware that there might be another option. Lots of ppl on MCAS groups on FB having horrible reactions What do you think is causing all the food, med, scents, exercise etc sensitivities on WD? Got any better explanation than histamine? You might want to google benzodiazepines and mast cells. Anxiety and Madt Cells, histamine and sleep etc etc. Here is mast cell symptom list. I speak to tons of ppl who developed pretty much all of that in WD. skin lesions or sores skin rash, spots, redness hives persistent fatigue itching flushing & severe sweating joint, bone pain headaches tachycardia (racing heartrate) eyes tearing/dry, eye pain persistent body/tissue pain difficulty exercising vertigo episodes of low body temperature unexplained Vitamin B12 deficiency scents/odors/chemical reactions difficult menses (females) numbness & tingling in face and extremities skin feels on fire unexplained anxiety sudden drops in blood pressure fainting persistent diarrhea vomiting unexplained weight loss cognitive impairment sinus problems chest pain vision problems hair loss mouth sores nausea swelling & inflammation odd reactions to insect stings anesthesia difficulties anemia thyroid problems decreased bone density unexplained weakness shortness of breath sunlight sensitivity temperature (hot/cold) sensitivity difficulty with foods, drinks anaphylactoid reactions anaphylaxis gastrointestinal pain, bloating unexplained medication reactions enlarged liver/spleen liver/spleen/bladder/kidney pain enlarged lymph nodes frequent urination recurring infections neuropathic pain constipation (MCAS) iron deficiency unexplained bruising, bleeding malabsorption intermittent tinnitus or hearing problems Link to comment Share on other sites More sharing options...
[Ma...] Posted February 16, 2021 Share Posted February 16, 2021 I just spoke to endocrinologist about MCAS and other issues including EDS, ME/CFS etc I asked him about COVID vaccine. I know a lot of us have sensitivities and mast cell issues caused by withdrawal. He says to not have the Pfizer vaccine and to ask Dr to inject small amount of Oxford/AstraZeneca one under skin first to see if react. Hope that is helpful to others. I would not agree that a lot of people have mast cell issues caused by withdrawal, so lets not make a sweeping comment in regards to that. I am very sorry if your mast cell issue was likely triggered by benzos, I understand it is a challenging condition to have. Any further comment eluding to mast cells in relationship to benzo use needs to have documentation/citation please. Thanks for understanding. I disagree with everything that was said in the first post. Just an anecdote without any evidence. You can disagree all you like. Just saying what my endo has recommended so others who are thinking of not having the vaccine are aware that there might be another option. Lots of ppl on MCAS groups on FB having horrible reactions What do you think is causing all the food, med, scents, exercise etc sensitivities on WD? Got any better explanation than histamine? You might want to google benzodiazepines and mast cells. Anxiety and Madt Cells, histamine and sleep etc etc. Here is mast cell symptom list. I speak to tons of ppl who developed pretty much all of that in WD. skin lesions or sores skin rash, spots, redness hives persistent fatigue itching flushing & severe sweating joint, bone pain headaches tachycardia (racing heartrate) eyes tearing/dry, eye pain persistent body/tissue pain difficulty exercising vertigo episodes of low body temperature unexplained Vitamin B12 deficiency scents/odors/chemical reactions difficult menses (females) numbness & tingling in face and extremities skin feels on fire unexplained anxiety sudden drops in blood pressure fainting persistent diarrhea vomiting unexplained weight loss cognitive impairment sinus problems chest pain vision problems hair loss mouth sores nausea swelling & inflammation odd reactions to insect stings anesthesia difficulties anemia thyroid problems decreased bone density unexplained weakness shortness of breath sunlight sensitivity temperature (hot/cold) sensitivity difficulty with foods, drinks anaphylactoid reactions anaphylaxis gastrointestinal pain, bloating unexplained medication reactions enlarged liver/spleen liver/spleen/bladder/kidney pain enlarged lymph nodes frequent urination recurring infections neuropathic pain constipation (MCAS) iron deficiency unexplained bruising, bleeding malabsorption intermittent tinnitus or hearing problems FB groups are the real authority on everything. They really know. Link to comment Share on other sites More sharing options...
[or...] Posted February 16, 2021 Share Posted February 16, 2021 FB groups are the real authority on everything. They really know. I completely agree with you, Maugham. If we stopped paying attention to the "authorities" on FB and youtube, we would be so much better off. Katz Link to comment Share on other sites More sharing options...
[pi...] Posted February 16, 2021 Share Posted February 16, 2021 Thanks Maugham, let's return to the original topic of this thread. Link to comment Share on other sites More sharing options...
[sh...] Posted February 27, 2021 Share Posted February 27, 2021 Thanks Ajusta, This is really useful information for those who are sensitive and gives an option to chat to our doctors if we are worried about possible sensitivities. We are all different, even in withdrawal. I think its a good idea to explore the options if you are sensitive to anything to be honest. Always try a small amount. Its good you have your doctor on board to support you with this. We do it with hair dye etc etc if were worried about sensitivities so why not this too. Best wishes and look forward to hearing any update you may have. Shania Link to comment Share on other sites More sharing options...
[...] Posted February 27, 2021 Share Posted February 27, 2021 I'm a proof of what ajusta stated in her first post. Developed full blown mcas since day 3 off valium after 11 month tapering off 2.5mg valium 1 month use. Link to comment Share on other sites More sharing options...
[Ga...] Posted February 27, 2021 Share Posted February 27, 2021 Slightly off topic, but I reported on my pre-registration form before the vaccination that I am allergic to penicillin, sulfa drugs, and cipro, and that I am on Eliquis as a blood thinner. I was assured that I would be fine, so I bit the bullet and got the shot this morning. So far so good three hours later. I had to wait for 15 minutes after the shot to make sure I was ok. My GP has also assured me that I would be fine. I received the Pfizer brand. Link to comment Share on other sites More sharing options...
[pi...] Posted February 27, 2021 Share Posted February 27, 2021 Slightly off topic, but I reported on my pre-registration form before the vaccination that I am allergic to penicillin, sulfa drugs, and cipro, and that I am on Eliquis as a blood thinner. I was assured that I would be fine, so I bit the bullet and got the shot this morning. So far so good three hours later. I had to wait for 15 minutes after the shot to make sure I was ok. My GP has also assured me that I would be fine. I received the Pfizer brand. You are not off topic at all, the topic deals with the Covid vaccine. I'm also allergic to the same antibiotics as you are. I had my first dose of Moderna on Feb.12 and had a sore arm at the injection site and some fatigue but that's normal for the vaccine. I'm glad yours went well. It's important to get the news out there that severe adverse effects are extremely rare. The more people that get vaccinated the better for everyone who wants to return to a sense of normaiity. pianogirl Link to comment Share on other sites More sharing options...
[Mi...] Posted April 2, 2021 Share Posted April 2, 2021 This looks like the BEGINNINGS of a "light at the end of the tunnel" for the world with this pandemic. Hopefully in time, every country will be at the point where Isreal is at. *Please keep replies upbeat and non political with the point for the entire world to eventually EVENTUALLY get here - a Pandemic Endgame. Article dated April 2nd 2021. https://www.theguardian.com/world/2021/apr/02/really-good-place-israel-nearing-covid-endgame Link to comment Share on other sites More sharing options...
[to...] Posted April 2, 2021 Share Posted April 2, 2021 Slightly off topic, but I reported on my pre-registration form before the vaccination that I am allergic to penicillin, sulfa drugs, and cipro, and that I am on Eliquis as a blood thinner. I was assured that I would be fine, so I bit the bullet and got the shot this morning. So far so good three hours later. I had to wait for 15 minutes after the shot to make sure I was ok. My GP has also assured me that I would be fine. I received the Pfizer brand. Totally agree! It is so much better than the alternative of getting covid. Glad you guys got the vaccine too and are doing well. I am so happy that I got it. I have alot of issues with meds, chemicals etc but did not have any adverse reactions to either dose. You are not off topic at all, the topic deals with the Covid vaccine. I'm also allergic to the same antibiotics as you are. I had my first dose of Moderna on Feb.12 and had a sore arm at the injection site and some fatigue but that's normal for the vaccine. I'm glad yours went well. It's important to get the news out there that severe adverse effects are extremely rare. The more people that get vaccinated the better for everyone who wants to return to a sense of normaiity. pianogirl Link to comment Share on other sites More sharing options...
[to...] Posted April 2, 2021 Share Posted April 2, 2021 Slightly off topic, but I reported on my pre-registration form before the vaccination that I am allergic to penicillin, sulfa drugs, and cipro, and that I am on Eliquis as a blood thinner. I was assured that I would be fine, so I bit the bullet and got the shot this morning. So far so good three hours later. I had to wait for 15 minutes after the shot to make sure I was ok. My GP has also assured me that I would be fine. I received the Pfizer brand. Glad you are doing well! That is great!!! Link to comment Share on other sites More sharing options...
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