Welcome to Phoenix Rising!
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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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@Santino I'm so sorry to hear you have so few safe foods! I know there are several people on this forum who have or have had that few foods. Gratefully it is not an issue of mine.
My question is what medications do you take to help your MCAS? Have you tried any? Food coloring, air pollution (chemical and petroleum), and dust and pollens seem to be my worst offenders, but I have noticed recently that ketotifen is helping block the reaction from the petrol fumes.
Also, if you aren't on any mast cell stabilizers or H1 and H2 blockers, are you able to get prescriptions compounded with no fillers or coloring? It might make it more tolerable to treat viruses and bacteria if you are properly medicated.
I definitely am not your best resource here as I have such mild MCAS, but it is helping me tolerate medications for my co infections now that I am on 4 different antihistamine and mast cell stabilizers. But my treatment is fairly new, so I can't answer yet if antibiotics work yet. 6 months of antivirals did nothing, 2 months of antibiotics doesn't seem to be doing anything either, but too recent to know. My personal gut feeling is that it has been more important for me to properly medicate my MCAS than viruses and bacteria infection. But I may change my mind with time.
Tagging @justy and @Gingergrrl as they have MCAS closer to your symptoms. I know there are others here, but my brain fails me as to their names!
I was exposed in a bad water damaged home, I haven't been diagnosed with MCAD yet but pretty sure I will and do have that going on. I too question weither the treating the viral infections will help, as I understand , maybe the cause of what makes us seceptable to these viruses may need more attn. and treatment, I cant see treating a virus without treating the cause because that's not going to stop our seceptablity to more viruses. for me it seems that if your severe hypersensitivities and autoimmunity was caused by say exposure in a water damaged building leading to seceptabily to viruses treating the virus is just a good way to ignore the cause. see my post under hypersensitivity and intolerance titled "Role of IgE in autoimmunity" a big question someone needs to answer here is what came first? the virus or the autoimmunity caused by a bad environmental exposure.
I tried to upload a picture of my red beet palms of hands that dictate what is going on in the rest of my body do to a severe reaction to one of my triggers including drug reactions and this severe reaction was caused by trying Valtrex, yes, it dawn on me a little late when trying to explain why I really was scared to even try it, my hypersensitivies are severe and it happens with several prescribed drugs, and yes I already knew dyes and fillers were a factor but totally forgot cause I'm a forgetful kind of person and everytime this happens doctors forget to make notes in my medical records, me bad for forgetting but really in my defience , I'm not a doctor, I'm the patient and have brain injury! grrrr, hum, I just tottaly forgot the point I was going to make but anyways, it became rather obvious to me that treatment ot either may help the other aka, getting the inflammation down, heres another very cheap way to deal with inflammation, ice packs and cool wet towels place around the inflamed area. this is what I've been doing along with washing my sinuses after a know exposure to a trigger and avoiding my known triggers as best as possible. pretty much live with a wet washrag around my neck. seems rather obvious from where I'm setting that dealing with the severe hypersensitivities might be very important in my case and others in this boat
I really think that viruses outside of detection are a major cause of CFS.
Why else would the body start getting so crazily sensitive to stuff that doesn't bother anyone else? The body knows there is a threat and is trying to figure out wtf is causing the problem. The sensors aren't giving clear answers.
It is like when people in the U.S call the police and the police end up shooting someone unrelated because they are so on guard and lack info on exactly where/what is wrong.
to me the viruses seem secondary, as a result of autoimmunity and likely the primary infection
I noticed that you tagged me and I read the original post but I have not had "brain fog, flu like feelings, frontal sinus congestion and also psychiatric symptoms" mentioned by the OP. My MCAS was of the severely allergic type with anaphylaxis last summer but is drastically better now (almost to the point of being gone) since starting IVIG. But I still take MCAS meds 2x/day plus Cortef so no idea how it would be without those things as a baseline (in addition to the IVIG) and no idea if this improvement is temporary or permanent.
My other issues besides the MCAS/allergic stuff are shortness of breath, dysautonomia/POTS, and muscle weakness. If any of this is helpful to the OP, let me know and am happy to say more.
that's interesting Gingergrrl, I did have the sinus brain involvement in a pretty severe way, so there could be a few things that separate us, I have severe FM too, all mold exposures are not the same and neither are we so ya, there will be many ways we can all get here.
Some of us have positive ANA speckled pattern
Especially because as far read, Prof. Meirleir treats infections with an extreme aggressive long term antibiotics approach where you have to take lot of diverse abx.
sorry, I'm not implying that infection is not involved in ME/CFS , but what kind of infection came first and what caused that infection can be a factor for some of us, just resently bacterial infection in the stomach has been pointed to , well theres a lot of things that can be involved in throwing off the PH in the gut, for example, when your involved in a mold exposure you are ingesting what you are inhaleing and ya it can throw off your PH balance.
sorry, I haven't spent enough time here to really know how I'm suppose to reply, weither to use quotes or not