Who has developed a bloodhound sense of smell since getting CFS?

[Athene]

I am not talking about the extreme sensitivity to certain pongs like perfume, smoke, cleaning products etc. that make many of us feel ill. I am taking about a super-heightened sense of smell to all things.

Since I got ill, I can smell just about any odour at the rate of one molucule per trillion. If someone has a fruit in a bowl with a tiny trace of mould on the side I can smell it from across the room. When I open my window I can smell when the guy two doors down from me is smoking inside his own living room. When my husband gets in from work I can usually smell exactly what he ate for lunch on his breath. If someone has petted a dog before comig near me I can smell it on their hands. I once walked down a street and I could smell patches of urine from three different dogs, each one had a distinctive smell and I could smell further down the road which one of them had peeed again - this was just AFTER a light shower of rain. If anyone offers me food that has been wrapped in clingfilm, the stink of the clingfilm on the food is so overpowering it nearly makes me vomit. I could go on and on!!!

It's like being pregnant, only much, much more so.

I'd like to know if anyone else has this too?

 

[ukxmrv]

I had this before I developed ME and so do many other members of my family. When ME struck it became much worse.

Seems to be affected by hormones as well. In the "PMT" part of my cycle it becomes much more acute.
If I go out in public I need to wear a mask or take one with me in case someone with perfume is close as I am liable to throw up.

 

[ballard]

I have a heightened sense of smell since I became ill with ME.

Sometimes I ask other people if they can smell something that I smell, and they can't.

 

[Purple]

I can relate to the heightened sense of smell. Often I can smell things that other people can't: someone painting their house down the road, a fire on the other side of town, plastic of plastic bottles... One of the worst things for me is that when I am too ill to have a bath, I get bed baths - or would get them if the smell of the wet cloth didn't make me so sick...

On the plus side, I find that I can sometimes block the smells that make me sick with a more pleasant smell I can tolerate - such as aromatherapy lamp with a drop of lavender or bergamot or mountain pine essential oil.

 

[Sparrow]

I absolutely know what you're talking about.

I find that it's particularly sensitive to things that are probably bad for me (chemicals, mould, etc.), though, so I figure it's probably at least partially some kind of defensive early warning system since my body can't defend itself properly. But yes, I can smell a damp washcloth from across the room.

 

[Ocean]

I don't know if my sense of smell is better, but I think I'm more affected by smells. Can't tolerate perfumes, laundry soap smell etc. I don't know if this is related but my other senses are more heightened. I hear every little noise, a small drip from my neighbor's apartment, my neighbor snoring, and tiny sounds no one else notices. Same with sight, I always noticed the smallest little things in my environment that go unnoticed by others. I think maybe my body is just more "on alert." I have heard that can also have to do with low magnesium levels.

 

[*GG*]

Hmm, interesting.

GG

 

[rlc]

Hi all super smellers, increased sense of smell is called Hyperosmia, it can be caused by cluster headaches, migraines, cystic fibrosis, some cases of epilepsy and Adrenal insufficiency (Addisons disease). Addisons is frequently misdiagnosed as ME due to the similarity of symptoms, its symptoms are so similar that cases of Addisons have been mistaken for ME during previous ME epidemics, such as those in Iceland. Its serious and can be fatal if untreated, but responds very well to treatment, so if any of you super smellers havent been tested for it, make sure you get tested for it soon.

A lot of doctors havent got clue what theyre doing when testing for adrenal insufficiency so heres a couple of links about it if anyone needs info http://elaine-moore.suite101.com/adrenalinsufficiency-a1543 and http://elaine-moore.suite101.com/addisonsdisease-a1714

All the best

 

[u&iraok]

I don't know if my sense of smell is better, but I think I'm more affected by smells. Can't tolerate perfumes, laundry soap smell etc. I don't know if this is related but my other senses are more heightened. I hear every little noise, a small drip from my neighbor's apartment, my neighbor snoring, and tiny sounds no one else notices. Same with sight, I always noticed the smallest little things in my environment that go unnoticed by others. I think maybe my body is just more "on alert." I have heard that can also have to do with low magnesium levels.

I think the sensitivity to perfumes, laundry soap, etc is Multiple Chemical Sensitivity (MCS).

I have the sensitivity to sound, but weirdly I seem to be undersensitive to light. I can't get enough light and never wear sunglasses even in bright light and have a hard time seeing everything in my field of vision.

I am struck by so many of the similarities between Autism and ME/CFS. I have a friend on the Autism spectrum and she can't stand to be touched and has this incredibly strong sense of smell, so strong, unfortunately, that she can't stand to be around a bad smell that I can't even smell or will just barely smell and that people give off too many bad smells and she will just walk away. Where'd she go? Is it me? I'm looking around for her. Is anyone's sense of smell that strong here?

 

[Athene]

Yes, mine is that extreme. I constantly make my poor husband go and have a shower in the middle of the day because I can detect the smell of various different types of bacteria that colonise people's skin. He's not a stinky person but I get closer to him than most people. Many people smell so bad to me that I have to run away from them in the supermarket. I always wash the family's clothes with strong disinfectant in the washing machine because otherwise some bacteria remain on them and start to smell bad when the clothes warm up or get exposed to humidity.

There have been several studies now in the USA and Scotland that found 80 percent, in one study 90 percent, of autistic people have Lyme disease. I also have Lyme disease and I have been wondering if it is Lyme that does this to our sense of smell.

 

[u&iraok]

You can idenify bacteria by their smell?! That is amazing. awe-inspiring! You need to find some way to make money off this!

The downside is having a sense of smell like a bloodhound but not enjoying smells as dogs do. You need to make this work for you somehow.

 

[Athene]

I have actually thought I could probably offer my services sniffing out drugs in airports or something... though I don't know what drugs smell like, I'd have to learn!!!
But yes, I can identify various types of bacteria.
I warned a friend just about to have surgery that her skin was colonised with MRSA. She thought I was mad! When they swabbed her skin they confirmed it. I told them her older son was also infected and as she and her husband both work in a hospital, they managed to get the whole family swabbed, and I was right.
I can also predict when foods are going to go mouldy by sniffing them, to me they get smelly days or even weeks (depending on what food) before they visibly break out in mould.

 

[Whit]

I can't smell any better than I used to ie not very well. I hate perfumes of all kinds but I always have. My sense of hearing may have improved, but it could be because I've been working on it with a few sound related projects.

 

[u&iraok]

I have actually thought I could probably offer my services sniffing out drugs in airports or something... though I don't know what drugs smell like, I'd have to learn!!!
But yes, I can identify various types of bacteria.
I warned a friend just about to have surgery that her skin was colonised with MRSA. She thought I was mad! When they swabbed her skin they confirmed it. I told them her older son was also infected and as she and her husband both work in a hospital, they managed to get the whole family swabbed, and I was right.
I can also predict when foods are going to go mouldy by sniffing them, to me they get smelly days or even weeks (depending on what food) before they visibly break out in mould.

Seriously, you should look into it. I've always had a good sense of smell/taste and could always tell when the milk was going bad before others could. I inherited it from my father who loves to cook because he loves all the flavors he can taste and now owns a restaurant. I went to a wine tasting he was having with wine sellers and once I got the hang of it, I could taste so many different things in the wine that the wine sellers were paying all their attention to me to see what I would say next. I thought about going into some field where I could use it. I considered something in the perfume industry. Now, of course, I never would because of the chemicals. The hot thing now is the flavorings industry but that, too, involves chemicals and I'm against what they do.

I guess the problem for you would be having people take you seriously and there's no precedent for a human doing what dogs do now, but maybe once you proved to them you could smell these things, maybe you'd get a great job and be famous! You could free lance so that you would only work when you felt well enough.

But just knowing you could help people is great. Being able to identify things like MRSA is really valuable. Were you able to identify it on that family early enough before it multiplied and caused problems for them?

 

[Athene]

Hi,
Yes I spotted it before it did any harm. Quite a lot of people have MRSA on their skin harmlessly, it only becomes a risk if they have an operation, when the wound can get infected, or get certain other skin problems which let it enter the body. The friends who I had sniffed told me that! Interestingly their older son, who also had MRSA on his skin, is autistic and he used to spend a lot of time sniffing people and at one point, himself. He stopped eventually when his mother taught him it is antisocial, you can't just walk up to people sniffing them like a dog. I think maybe he could smell that smell too. I asked him about it but he doesn't give you comprehensible answers to anything so that is still a mystery.

I've been thinking about work where I could use this. I think wine sounds good but you do have to taste it too and my alcohol intolerance is so extreme I could not handle even a drop! And as you say, perfumes are a total no-no.
I did wonder about tracking missing people but you also need lots of other skills for that, and I do think dogs would probably beat me at it! But I would love to learn to do that.
realistically all I can think of is industrial settings where the chemicals would make me too ill, or biological smells which are totally gross. The majority of the smells we smell on things are produced by bacteria, and when you can smell them as intensely as I do, they all basically smell like different types of poop. I just want to keep away from them!!!

 

[u&iraok]

I've been thinking about work where I could use this. I think wine sounds good but you do have to taste it too and my alcohol intolerance is so extreme I could not handle even a drop! And as you say, perfumes are a total no-no.
I did wonder about tracking missing people but you also need lots of other skills for that, and I do think dogs would probably beat me at it! But I would love to learn to do that.

You can spit out the wine, it's acceptable. They provide little paper cups at wine tastings. I don't know if having it in your mouth so many times would mean you would absorb too much, though. My alcohol tolerance is bad and I don't know that I would want to do that.

The dogs would be better at rough terrain, scrambing over things and going in tight places, but heh, you can talk, and reason better than a dog!

realistically all I can think of is industrial settings where the chemicals would make me too ill, or biological smells which are totally gross. The majority of the smells we smell on things are produced by bacteria, and when you can smell them as intensely as I do, they all basically smell like different types of poop. I just want to keep away from them!!!

No fun. They have ear plugs and headphones for sensitive ears and sunglasses for sensitive eyes, why not a nose mask? I guess it would look funny. All they have is the mask that covers mouth and nose and we need our air, just thinking about blocking both my mouth with a mask makes me anxious.

 

[CAcfs]

I have the same problem. I smell chemical smells, like fragrances added to products. Those drive me up the wall. THEN, I also can identify different bacteria/germs like Athene. I don't know the names, but I will say, "this street smells like that rotten milk/expired chicken smell." Or something will have the "wet towel" germ smell (a mold or mildew I presume), but it won't be a wet towel, it'll be someone's arm, so I can tell they rubbed against a wet towel, or somehow got that mildew on them. Or the dirty dish sponge smell. I can distinguish all those. And those don't drive me insane like the fake smells, but I can tell all those "organic" (aka, living thing) smells apart.

I have also been diagnosed with Lyme. So go figure!!!!!!!! Pretty nuts. I would really like to know what causes this. A few months before I crashed....really for about a solid year, the smell of my deodorant had been driving me insane, and I wouldn't wear it. That was really my first symptom, honestly. It came before the others.

I am wondering about adrenal involvement. Not sure if it could be due to Lyme itself, or if it is just kind of a part of the whole thing going on. Would love to hear thoughts though.

I'm guessing it's either adrenals, since that is a known symptom with dysfunction of adrenals, or if it's toxicity from too much of an infection in the body.

 

[Athene]

I had thought maybe the Lyme is actually in our brains making the nerves, or brain part that responds to smells, hyper sensitive. Maybe everyone's noses can smell all these things but their brains don't get a strong enough signal to register them, whereas being inflamed in the relevant brain part makes us react to the weakest stimulus.
Do you know any more about adrenals relating to the sense of smell? I have badly under-functioning adrenals and I had no idea smell was connected at all, I'd love to learn something about this.

I am curious to know which bacteria make that wet towel smell. I have sometimes had that pong onmy own armpits, I have to bathe in dettol every so often because my own BO is so unbearable (even though of course nobody else can smell it).

CAcfs, do you sometimes get things out of the washing machine and they still smell of BO or other pongs to you? mingled in a horrible way with the smell of washing detergent?

I have to wash things like crazy to get them properly clean. I put disinfectant in the washing machine in one of those balls (the brand they have here in Italy is Napisan, sold as disinfectant for baby clothes which of course get regularly puked on) which kills the bacteria, and a large spoon of bicarbonate of soda in the drawer with the detergent, wich traps a lot of smelly chemicals the way charcoal does in the gut.

I just thought of something else interesting. I have two relatives who are schizophrenic and they have mentioned a lot of people in mental institutions are smell obsessed and can smell "imaginary smells" (according to the psychiatrists). I am wondering if they have the same sense of smell thing that we do? One of these two gets so obsessed with cleaning things she will wash herself with bleach and do other things which make everyone certain she is crazy. But I do wonder...

I put bleach in my own bath sometimes. I learned on an allergy website that doctors recommend this for children with severe eczema, apparently it clears up the eczema immediately by killing all the bacteria on the skin. No more horribly distracting BO.

 

[CAcfs]

Sorry it took so long to respond.

I have just seen that sensitivity to smells is on those lists that you see on naturopathic websites that describe symptoms of adrenal fatigue (such as adrenal problems that regular MD's won't treat). But I believe I have seen that on the "short lists", not the lists with 100 symptoms.

I'm not sure about the theory about the nerves in the brain over-reacting. Just don't know enough to comment either way. Neuro things do go on with these diseases, so who knows.

As far as the B.O.....when I first got sick, I got really bad B.O., and the first few days, it was SUPER bad. And yes, others could smell it, but only when they were within maybe 12 inches of me. Still, I do have phases of bad B.O. To me, it smells almost vegetal, like how it would smell if a vegan passed gas (not that I know what that smells like, but it's not like the dairy aspect of GI gas...it is more like a slightly clean but stinky/vegetable smell)....like something natural, but something kinda funky and fermenting slightly. But from my armpits. So maybe it's just the normal balance of good/bad microbes on the skin or in the body, being misaligned, so the bad can flourish. It think in the beginning though, my BO was like that smell mixed with smelly gym sock. But BAD.

So maybe it is really there, and it's obviously different enough that the smell itself is noticable?

Anyways, I have heard of people with Lyme getting what are called olfactory hallucinations. One common one is cigarette smoke. I have heard of this in more than one case, and in some cases the smell is very unmistakable and strong, yet not real. In fact, I had auditory hallucinations for awhile, where I would hear muffled voices, or even specific genres of music, that were not real. So the schizophrenic people you know may just be having genuine hallucinations. However, I don't think what we are experiencing is a hallucination. I think if it is, you'd know....something would hit you one day that it's not real, because you can't find the source in those cases. One day, you just give up looking for the cigarettes and accept that they aren't there. But to me, yours sound NOT like hallucinations. Though I never experienced the olfactory ones.

Also, if the bleach is killing the smell, it is probably real.

I do get smells of BO that linger on my clothes. It is awful! I do think it's some kind of bad balance of microbes on the skin, possibly coming from the inside but who knows....as I mentioned above. Because whether or not it's strong, my BO has definitely changed. If you are on anything to kill Lyme, that could be doing it, upsetting the balance. Though for me, I got the BO before I knew I had Lyme, so maybe it is just the Lyme itself or more likely another infection like a yeast that is also flourishing.

The bacteria that make the wet towel smell is not the same smell on my armpits.....though it's a little close to it. This towel smell, I smell on lots of towels that were not dried properly, like ones that sat in washer overnight.

Sorry this is so scattered....just really tired but wanted to comment.

Anyways, my guess is that it's either adrenals (which to fix, you'd just support adrenals with whatever supportive herbs/vitamins or adrenal extract or a prescription like Cortef)....or that it's something wrong in the brain, like what you mentioned....perception. Good luck!

 

[Marlène]

hello Athene

I become agressive when I smell certain bacteria and mold. My son had MRSA too on his feet and it does has indeed a very distinctive swampy sock smell. I even wrote a letter to a scientist in Holland who studies malaria. He said they are looking for a powder to spray on the ground because malaria apparently thrives when there is mold around. They also like MRSA.

When someone opens the fridge, I know how old the food is that's inside. I would be a very good food poison tester - just by smelling. Parfums, gasoline, cigarettes, ... they make me sick. I smell the different components like colours in a picture but they are too overwhelming.