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question, does any ME/CFS'ERS not have either all ergic or non-allergic/chemical hypersensitivities?

osisposis

Senior Member
Messages
389
airway involvement? maybe some only with stomach involvement that may be a indigestion cause instead of inhalation/environmental exposure, some unsure?

I know I got ill from exposure in two moldy houses that were very different as was some symptoms and the outcome from each, my airways were heavily involved so no doubt here, now either I got the herpies virus, and EBV virus before and it never caused illness but stayed dormant in the body until these environmental exposures and the severe hypersensitivity disease it caused brought the EBV virus out of hideing and that reaccures everytime a exposure to certain triggers (like mold, chemicals,voc's, allergen, irritants) sets it off or I got it afterwards as a seceptability factor because of the injury from exposure, it doesn't really matter.

something I've realized is that yep, when I get a cold or flu or something it does not present like pre-ME/CFS did. and the big notice is that it makes my hypersensitivity reactions more severe again! but also seems to wipe out that bug pretty quick in the process. I don't know about how other ME/CFS'ers view the process in witch their disease accured, but interested in hearing from others.

for me this disease is first and formost severe hypersensitivity disease with seceptability to other pathogens, and fungal infection being opportunistic invader just like other pathogens, they all need to be treated. including the hypersensitivity. and I'm pretty possative fibromyalgia is caused by inhalation, sinus/brain involvement so more specificitly are there people with no chronic sinusitis/rhinosinusitis, severe asthma here?

environmental exposures can be through inhalation, ingestion, and by durmal /skin, there can be secondary effects to these areas but likely if they are directly involved in your ME/CFS you know it. point is we may all be here because of environmental exposure, in this case the cause needs to be realized as preventive medicine , just like if theres many here that don't get the lengths they need to go to to avoid their triggers, that's important to do with hypersensitivity exspecially when you are reactive to so many things, the immune system is disperate for some relief and it helps the severity overall to practice avoidance of your triggers and it requires paying close attn. to your disease to figure out what a lot of them are and first step is to basicly get all possible triggers out of your living space, food, water, off skin, as much as possible.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Your symptoms appear to match up with MCAS mostly. There are lots of threads here on the subject of Mast Cell Activation Syndrome and there are a few good websites for it as well. There are some people here who do have some experience with these issues.

http://forums.phoenixrising.me/index.php?threads/what-is-mcas-like.43625/

http://forums.phoenixrising.me/index.php?threads/has-anyone-taken-ketotifen-for-mcas.38299/

I wouldn't agree that fibromyalgia is associated with allergies primarily (if I understand correctly). Although one can have both.
 

osisposis

Senior Member
Messages
389
theres quite a bit of research showing it's the chemical exposures that induce both allergic and non-allergic hypersensitivities, didn't say fibromyalgia was caused by allergens, lots more involved in the air in a high moisture water damaged building/house. even more so when it's been remoldeled but the water intrusion problems not fixed and mold hasn't been completely removed. secondly the immediate effects to the brain with re-exposures to triggers are not all about allergy, chemicals and voc's play a role and probably a few other things.
 

Battery Muncher

Senior Member
Messages
620
I find people with ME/CFS tend to fall into two categories:

1) significant hypersensitivity - heavily affected by basically everything, every medicine or supplement they take has a major effect

2) significant insensitivity - rarely affected by most things, medicines (such as paracetemol) seem to have less impact than when healthy

People who are in the first category typically seem more severely affected.
 

osisposis

Senior Member
Messages
389
I find people with ME/CFS tend to fall into two categories:

1) significant hypersensitivity - heavily affected by basically everything, every medicine or supplement they take has a major effect

2) significant insensitivity - rarely affected by most things, medicines (such as paracetemol) seem to have less impact than when healthy

People who are in the first category typically seem more severely affected.


that to me would point to possible different causes of ME/CFS, it seems to me that like usual nobody is interested in sorting out and looking for causes as much as they just want to treat and just see if their treatment works, blaaa, medical science , there is a substancial amount of people with CFS,FM,MCS,IBS YET MCS DOESN'T GET THE ATTN. IT NEEDS IN THIS, seems it should be pretty obvious that chemical exposure is a cause, yet MCS is ignored, instead we get tested to look for viruses and treated for viruses and ignore everything else. why not, look at the money that is being made while more and more people become ill. ssdd, ugg
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
hat to me would point to possible different causes of ME/CFS, it seems to me that like usual nobody is interested in sorting out and looking for causes as much as they just want to treat and just see if their treatment works, blaaa, medical science , there is a substancial amount of people with CFS,FM,MCS,IBS YET MCS DOESN'T GET THE ATTN. IT NEEDS IN THIS, seems it should be pretty obvious that chemical exposure is a cause, yet MCS is ignored, instead we get tested to look for viruses and treated for viruses and ignore everything else.

I disagree that MCS is the cause of ME. I didnt have any chemical issues or food intollerances. I got these only after many years of being sick (after I had been doing part time cleaning work for a while while ill). I didnt even ever have an true allergy till I'd had this long term. So I believe MCS is just another symptom of whatever this illness is.
 

osisposis

Senior Member
Messages
389
I disagree that MCS is the cause of ME. I didnt have any chemical issues or food intollerances. I got these only after many years of being sick (after I had been doing part time cleaning work for a while while ill). I didnt even ever have an true allergy till I'd had this long term. So I believe MCS is just another symptom of whatever this illness is.


thanks for your input, that's interesting , have you been diagnosed with past or present EBV or other viruses?
 

Snowdrop

Rebel without a biscuit
Messages
2,933
There's been discussion here on PR as to whether ME is more than one illness.
Together we represent a huge number of symptoms. The best we have at the moment is the diagnostic criteria Canadian: https://fm-cfs.ca/support/patients/cfsguidelines/ME-Overview-1.pdf or International: http://solvecfs.org/international-consensus-criteria-published-for-myalgic-encephalomyelitis/

Some opine that we all have Lyme disease or that ME is EDS (Ehler Danlos syndrome). Many people with ME have other health issues that seem to cluster around having ME.

I don't know what the answer is to any of this but I think we might leave open the possibility that not all of us have the same illness or to look at it differently we have subsets of the same illness. But not all of us can be described as having what you have.

I believe it could be possible for mold to create some kind of illness but not everybody who is exposed to mold gets sick so something outside of the environment is also at play.

There may be good reason to see medical facilities set up to deal with environmental illness but that would not help many people who have been given the ME diagnosis (by default). It would be interesting to sort out what percentage various subsets are. But I would expect this to not be totally reliable as many (especially those newly ill) may not be aware of alternative diagnoses and we may be self reporting in error.
 

osisposis

Senior Member
Messages
389
There's been discussion here on PR as to whether ME is more than one illness.
Together we represent a huge number of symptoms. The best we have at the moment is the diagnostic criteria Canadian: https://fm-cfs.ca/support/patients/cfsguidelines/ME-Overview-1.pdf or International: http://solvecfs.org/international-consensus-criteria-published-for-myalgic-encephalomyelitis/

Some opine that we all have Lyme disease or that ME is EDS (Ehler Danlos syndrome). Many people with ME have other health issues that seem to cluster around having ME.

I don't know what the answer is to any of this but I think we might leave open the possibility that not all of us have the same illness or to look at it differently we have subsets of the same illness. But not all of us can be described as having what you have.

I believe it could be possible for mold to create some kind of illness but not everybody who is exposed to mold gets sick so something outside of the environment is also at play.

There may be good reason to see medical facilities set up to deal with environmental illness but that would not help many people who have been given the ME diagnosis (by default). It would be interesting to sort out what percentage various subsets are. But I would expect this to not be totally reliable as many (especially those newly ill) may not be aware of alternative diagnoses and we may be self reporting in error.[/QUO


I understand not everyone is here for the same reasons, it seems that some attempt to group us may shed some insight and it's really needed. exposure in water damaged building/home is not even the same as exposure to mold in general , it's everywhere all around us, ect. in a high moisture indoor setting it's accumulative, and the mold by products play a role, people can and do get very ill from these types exposures. I think MCS, MCAD,FM, CAN AND DO PLAY OUT through the sinus/brain involvement by exposure to high dose exposures to chemicals in those most severely affect by inhalation exposures in inclosed/indoor environments, even take mold out of the picture and look at people sick from sick buildings without mold but chronicly, weither low dose long term or high dose short term, to chemicals, look at oil spill workers who got MCS from cleaning up oil spills. high moisture involves high amounts of voc's in a water damaged building/home, MCS is thought to be caused by voc exposure, see J W Bennetts works, katrina, and MCS,VOC EXPOSURE. to me it goes a long way in correlating my illness to the exposure. theres no lack of knowledge if you do the research that dormant or hidden viruses can come into play after the fact and be re-activated causeing problems, nor the fact that seceptability to infectious agents after the fact also plays in, however I'm setting here with severe hypersensitivities/MCS , INCLUDEING HORRABLE REACTIONS TO MANY PRESCRIBED MED'S IN THE PAST TO THE POINT I have become very leary about trying anything new and I have just been diagnosed with ME/CFS and labs showed EBV and HHV-6 and EBV and given a prescription for ValACYclovir/Valtrex and I'm afraid to even try it . I fell like a Rat in a cage, have for years, I'm sure many of us do. I have watched for years people trying all kinds of stuff, some in excess, obviously we know that chemical exposures can CAUSE us to haveME/CFS, yet my MCS/ severe hypersensitivities and how I got them in a bad high moisture, high dose moldy house just keeps getting ignored, who do I have to go to to get treatment designed around the cause of why I'm here? along with treatment of re-activated and/or new infectious agents? to be given a prescribed med that that is not even a cure for EBV ? how is that helping? unless it's reconized somewhere that by controlling that , my body will be allowed to heal the other illnesses? anybody here with severe MCS that had good results from taking a viral med? or was able to take viral med's without having a reaction?
 

osisposis

Senior Member
Messages
389
holy cow, yes, I'm upset, after the moldy house exposure I was diagnosed with PTSD, highly sensitive to multiple molds and mold mixes, dignosed with fibromyalgia, CHRONIC SINUSITIS/RHINOSINUSITIS,IBS,EEG testing off the charts , had specific Ig testing , dignosed with fibro a few more times, diagnosed with CFS and fibro again, believed by a infectious disease doctor in 2007 but he prescribed pain killers I had already told him I couldn't tolerate, cant even go to the denest without suffering reactions from just the smell and when injected with numbing agents my whole body went into trimmers mode. it's been one thing after another, don't bring up Shoemaker, been there, he didn't like me because I couldn't tolerate CSM and sorbital , he refuses the allergic side of this and he doesn't have all the answers like others in that field largely because they have ignored the voc's the allergies, the mast cells, been to Gray in Az. ignored that to because they all on the mycotoxin band wagon even tho they say they consider everything involved in the water damaged building. I'm a outcast because I'm in the severely ill group of ME/CFS and the larger portion of people exposed in water damaged buildings/moldy indoor environmental don't show allergies to the molds they were exposed to.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I understand the fear of trying something like an antiviral if you have significant sensitivities. It's always easy for the medics to say do this or that and you'll be well. Perhaps getting the sensitivity under control--does it not help you if you take antihistamines or are you sensitive to those?

I know there are others here struggling with sensitivities--it sounds horrible to deal with.
We all could use some better expert medical solutions.
 

Horizon

Senior Member
Messages
239
I break out in hives or itchy bumps from random stuff. It's not a "real" allergy but obviously I'm sensitive to something.
 

osisposis

Senior Member
Messages
389
I understand the fear of trying something like an antiviral if you have significant sensitivities. It's always easy for the medics to say do this or that and you'll be well. Perhaps getting the sensitivity under control--does it not help you if you take antihistamines or are you sensitive to those?

I know there are others here struggling with sensitivities--it sounds horrible to deal with.
We all could use some better expert medical solutions.


I can tolerate one extra strength excederin that helps with migraine, but that's about it, antibiotics that are not derived from molds, and in the past right after I got ill I could tolerate OxyContin but it had a strange effect , 1/2 of 15 or 20 ML if I remember right would cause me to crash and sleep straight through 14-16 hours, witch to be able to sleep that long when I was so deprived of sleep from chronic exposures was pretty welcomed relief. I've so many inhalants for allergies and they make matters worse. I've found the best and safest way to bring down inflammation in the body that's safe is by ice packs and cool wet towels placed on inflamed areas, washing the sinuses after a known chemical exposure stops the process of continuing effects to the brain, very careful about moldy fruits,veggies and chesses,try hard to keep nasties out of fridge, sink draines ,bathroom,trash,dirty clothes, chemical free laundry detergent,all soaps ,shampoos,ect. avoidance for me involves not only the airways but ingestion and dermal, that's how being in a bad water damaged home can affect you. and it is impossible to completely avoid everything I'm reactive to but every bit helps.