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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Are infections really a cause?

Strawberry

Senior Member
Messages
2,073
Location
Seattle, WA USA
@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!
 

osisposis

Senior Member
Messages
389
@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.
 

Deltrus

Senior Member
Messages
271
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.
 

osisposis

Senior Member
Messages
389
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
 

osisposis

Senior Member
Messages
389
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
 

osisposis

Senior Member
Messages
389
oh, remembered, lols, anyways, take EBV for example and yep they found mine a tiny bit elevated so that's why I got the prescription Valtrex, supposedly some 95 percent of the population has it yet it caused no problems, I don't think anyone can tell me if I had it prior to my mold exposure. bad environmental exposures are known to activate hidden viruses, so regardless of weither I have EBV prior or post water damaged building exposure, it caused no obvious symptoms or anything if I did! I didn't have autoimmunity before my WDB exposure, I wasn't hardly ever sick prior to my WDB's (actually 2 ) so I think we have to realize for some of us that viruses weren't a problem until after we had autoimmunity and inflammatory disease.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
@Santino
Weird stuff often shows up in serology tests, plus they sometimes show false positives, e.g. I was once told I had hepatitis C. Even when they are correct, they can reflect diseases you were exposed to decades ago.

For example, I never had a case of measles when I was a kid and never had the vaccine, but my serology shows I had what's called a subclinical infection. Even though tularemia is a severe disease, subclinical infections are common, according to Wikipedia.

My doc prescibed antibiotics for an infection that showed up in my bloodwork, but I didn't feel any better for it. I won't do that again. I think we ought to reserve those drugs for when we really need them because they can have serious consequences, such as alterations to your microbiome and the development of antibiotic-resistant bacteria.

Just my 2¢.
 

Strawberry

Senior Member
Messages
2,073
Location
Seattle, WA USA
hi @Santino I, same as osisposis, took Valtrex for very high EBV. I didn't feel any better or worse, but my titres came back down to normal levels. The pharmacy changed brands on me and I reacted horribly to the 2nd brand. It was at that time that we decided to abandon valtrex and try the antibacterials.

I am now on doxycycline and clarithromyacin (2 months), I believe the main thing this is trying to hit is bartonella henselae. Dr Kaufman at Open Medicine Institute is the one that did the blood draws and diagnosis. Including the MCAS diagnosis.

For the record, I had high very titre to EBV and other herpes class viruses, mycoplasma pneumonia, parvovirus, and bartonella hensellae. Spelling may be inaccurate. ;)

In support of your theory, I had ear infections and strep throat several times per year growing up. I had my tonsils out in my early to mid 30s (personal choice), and the doctor was surprised to find them full of infection. He told my mom while I was still under that I had had chronic tonsillitis all of my life. Getting my tonsils out did help for a year, then I was back to being sick. Also for the record, I didn't get mild CFS until about 5 or more years AFTER getting mono. If anything triggered mine, it was a toxic exposure.

So its truly the chicken/egg conversation. Everyone is different, its so hard to figure out what caused what. There are so many other issues that I would also question, not only infection.
 

Gingergrrl

Senior Member
Messages
16,171
Tagging @justy and @Gingergrrl as they have MCAS closer to your symptoms.

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.
 

Strawberry

Senior Member
Messages
2,073
Location
Seattle, WA USA
@Gingergrrl sorry if I remembered wrong, I tagged you and justy because I thought your MCAS was preceeded by Mono? And justy I think has lyme? I'f I'm wrong just blame it on brain fog.

@Santino mono is EBV. Mononucleosis but shortened. I know it goes by other names around the world, but the name evades me at the moment. Good that you don't have CFS. Mine is mild-moderate, but CFS and MCAS together make my life boring! I work, but no longer am able to have a social life, and can't clean or cook.

What autoimmune disease do you have? Some of us have positive ANA speckled pattern, which hints at autoimmune disease.

Also, I have no idea how long I am to be on antibiotics. I do need to ask that question of my Dr.

Oops, edit to add that the bartonella test was ran by Galaxy. It actually detected the DNA of bartonella in my blood, so considered very accurate.
 

osisposis

Senior Member
Messages
389
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.
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl sorry if I remembered wrong, I tagged you and justy because I thought your MCAS was preceeded by Mono?

Sorry I missed that part and thought you meant we had the same symptoms. You are totally correct that I had mono in early 2012. My MCAS began in early 2015 so there was a big gap although I tested very high on histamine levels at the end of 2014 (pre-symptoms). I also had toxic mold exposure which I think played a bigger role in triggering the MCAS than the mono/EBV did but I will never know for sure.

Some of us have positive ANA speckled pattern

Yes I have ANA 1:160 speckled pattern but the rheumy dismissed it as "normal" or even a "false positive" which I thought was ridiculous with all my autoantibodies.
 

osisposis

Senior Member
Messages
389
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.
 

ErdemX

Senior Member
Messages
113
Location
Istanbul
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.

Hi.. sorry for the MCAS. I am a housebound CFS patient with always very low energy, but at least I can tolerate almost everything.. I guess MCAS must be so hard on top of CFS.

I'm also a patient of KDM's and that is not always the case. With me, he didn't want to start an aggressive abx treatment; as I could understand, he thinks there is an auto-immunity going on and altered gut bacteria is one of the major triggers of it. So with me and some of the patients I know, his priority is to correct the gut microbiome. I also don't believe he makes such a big money from prescribing drugs? I don't buy the drugs from him :) And his fee as a doctor is extremely low for an European professor.
 

osisposis

Senior Member
Messages
389
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.


but gee, it hasn't just been damage to my gut , inhalation exposure in a moldy house affected all my airway not just my gut. the gut is actually part of the airways as is the skin. so in a water damaged or sick building all 3 routes of exposure , inhalation,ingestion and dermal/skin absorbtion all play a role
 

Gingergrrl

Senior Member
Messages
16,171
sorry, I haven't spent enough time here to really know how I'm suppose to reply, weither to use quotes or not

No worries and I think if when you quote others you put it in the yellow quote box but then when you post or reply yourself, it is not in a quote box, it will be easier for everyone to read it. The moderators can help explain it better than I can! And it's just a formatting thing and nothing to do with the content.