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Simon Wessely on Multiple Chemical Sensitivity (MCS): "related to expectations and beliefs"

Discussion in 'Other Health News and Research' started by Laelia, Apr 14, 2017.

  1. justy

    justy Donate Advocate Demonstrate

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  2. Hip

    Hip Senior Member

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    Rest assured that I am not at all disputing that chemicals in the air (from cooking, household cleaning products, etc) can trigger MCAS symptoms. I appreciate that this can be one of the many ways that mast cell degranulation and MCAS symptoms are triggered.

    In fact, somebody I know had to taken into hospital care after cooking oil spilt onto the hot surface of the kitchen oven and turned into smoke. When she breathed in the smoke, it triggered some severe mental health symptoms (which she suffers from anyway, on and off), and she needed hospital care for some weeks as a result. I am not sure whether she has MCAS, MCS or a classic IgE allergic response, but in her case it seems to affect her brain.


    What I was saying earlier is that it is not the actual smell of the chemical in the air that triggers the MCAS symptoms, it is the action of that chemical on the mast cells in your body. The smell of a chemical is something purely concocted by your sense of smell (olfactory organs and brain).

    In other words, if you lost your sense of smell, and could not smell anything, MCAS symptoms would still be triggered by certain chemicals in the air.

    But these subtleties are only important if one is interested in examining the causal mechanisms of MCAS and MCS. In the case of MCAS, the sense of smell is not thought to be part of the causal mechanism; but in the case of MCS, the sense of smell may well be involved in the causal mechanism.



    I have just been looking around in my MCAS folder on my computer for anything interesting (my memory these days is totally shot, so anything I read of interest I save in the relevant folder on my computer — tedious, but that is the only way I can function); I found some interesting things:

    Leukotriene inhibitor drugs like montelukast (Singular) are used to treat MCAS; has anyone any experience with those? The frankincense-dervied supplement 5-loxin® is a leukotriene inhibitor. I wonder if that might help.

    Advanced glycation end products (AGEs) activate mast cells. AGEs are created in cooking whenever you brown a food (eg, the brown crust on roast potatoes, baked cakes or bread, or the browning on grilled meat are examples of advanced glycation end products). Browning is the Maillard reaction. I wonder whether avoiding AGEs in cooking might help reduce MCAS symptoms.

    • The supplements: luteolin (not be confused with lutein), diosmin (aka diosmetin) and apigenin are mast cell stabilizers. And kaempferol, fisetin, quercetin and morin have anti-allergic properties. Source: Twenty-first century mast cell stabilizers

    • Borrelia, Mycoplasma pneumoniae, Aspergillus and Staphylococcus delta toxin are known to activate mast cells. So addressing any infections or co-infections with these pathogens (that are treatable) may reduce MCAS symptoms. Mycoplasma pneumoniae co-infection is sometimes found in ME/CFS, and can be treated with antibiotics.
     
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  3. justy

    justy Donate Advocate Demonstrate

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    Yes, this is very true - although not widely recognised. Dr Afrin, for example does not believe that many of his patients have Lyme and co, but have simply been misdiagnosed. For some of us, with evidence of high bacterial loads in the body, treating those conditions in the hope they will reduce the MCAS symptoms is impossible as we react to all antibiotics. I reacted very severely to IV antibiotics and orals so have no treatment options left for the infections.

    Have tried Neuropotek, made by Theorides, which contains both Quercetin and I think Luteolin, but it gave me terrible headaches.
     
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  4. Hip

    Hip Senior Member

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    @justy I tried quercetin also (for its supposed antiviral effects), and found it was too stimulatory for me. It kept my mind too stimulated the whole day long. Quercetin affects the A1 adenosine receptors, like caffeine does, and this might be why it is stimulatory.

    I am fine with apigenin and luteolin though; in fact I used to take apigenin regularly for is calming, anti-inflammatory, anti-anxiety effects. Luteolin also has these properties.
     
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  5. btdt

    btdt Senior Member

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    @Hip
    I two teeth both with root canals become infected had them removed by a dental surgeon end of Feb... had a few courses of ab before .. wrong ab according to the denal surgeon... one given by the hosp.

    Point...
    After ab treatment from the surgeon right ab according to here my movement disorder stopped... flat out stopped for a wk. It came back if I recall correctly at 11 days post ab treatment. I had no sign of infection when the md came back... 4 days later signs of infection came back repeated the ab the md stopped again.

    i went to my family doc with this info she did tests... for infection none showed. The md is back.

    Any advice?

    ps i have had anaphylactic reaction to ab in the past ... was told I was too reactive to treat what a doc thought was seizures... turned out to be a md.. maybe... so I avoided all drugs and the foods that were causing blisters... till this Feb when I had to care for my teeth.
     
  6. Hip

    Hip Senior Member

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    @btdt I am not quite seeing how these tooth infections relate to MCAS or MCS. Can you explain.
     
  7. btdt

    btdt Senior Member

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    ok I will give it a shot... i have mcs have had it a long time bf dx...

    it is really about a movement disorder I acquired after .. that is caused by a reaction to chemicals best i can sort... when i get in chemicals i cannot walk jerk head to toe... along with a long list of other things... this is a bad one thinking throat closing are the other two worst reactions...

    I started with a movement disorder last June first in my arms and it was slight .. in Aug went to a wedding rented a room took my own bedding ect.. but the hall way of the hotel had a strong smell i held my breath to get the room... but it was too late that day was the first day of complete body movement disorder and problems walking.

    That was early in... I learned some things bought a half face respirator fought with people in my house about scents.. even harder fought this has been ongoing... along with renovations... long tired story.

    That is how it started... however when i had the tooth infection after the teeth were pulled and i was put on antibiotics about 4 days on abs the movement disorder stopped...
    now i know days in bed are helpful to the md and at first thought it was all the bed rest... but it had never stopped in months it had not stopped completely until the ab... I know I wanted it to be the ab as that is an easy fix and this md is a life messer as when it is bad i can't walk can only lay in bed and jerk...

    other things beside rest i took sudafed... for the severe head pain some not much high dose ibuprofen... ( surgeon ordered it but it has caused my feet to pain and swell in the past... so I took only a few there is 200mg in sudafed so i was getting half dose anyway.

    After a wk on the ab i was deemed infection free by the dental surgeon... later( within 2 wks.) the movement disorder came back hard when i tried to walk home from a place ... another story...

    I had a second treatment with the same ab about 2 wks after the first when my face swelled up again... the second treatment also stopped the movement disorder...

    i told my doc I thought the ab stopped the md .. so she did some testing and can't find any infection to treat...

    the movement disorder is back it is made many times worse by chemicals..

    for me mcs seems to cause a movement disorder once I am set off I can jerk for a wk or more...

    however antibiotic treatment of an infection seemed to stop the movement disorder... twice (seemed to) it did... stop it but i also had no reactions in that time and the day the md came back after the first treatment with ab i had to take the car to a garage with a lot of chemicals... it came back hard... back to bed

    sometimes it is takes a wk in bed jerking for the reaction to stop... it is better now that i know to wear a mask ect take supplements to try and help it...

    I guess it could have been a coincidence but the difference of walking or not walking is a big one...

    alert am I making any sense sometimes I can't tell if I am or not.
     
    Last edited: Apr 19, 2017
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  8. btdt

    btdt Senior Member

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    On another kind of related note... the place i am waiting to get into that has a 2 year waiting list... the receptionist told me they have a lot of mcs people going there who are in wheel chairs who heal...
    I don't know if it is common on here or not but mcs can cause movement disorders according to them...

    if only their waiting list was not so long.

    Movement disorders caused by mcs ... have you heard of it do you have it...? maybe I should make a new poll.. if I knew how I might.
     
  9. Hip

    Hip Senior Member

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    @btdt do you know which antibiotics were given to you, when your movement disorder stopped? Many antibiotics also have anti-inflammatory and immunomodulatory effects, so it could be these anti-inflammatory effects that were helping your movement disorder.

    You might ask your doctor to try the same antibiotics again, and see if you can repeat your success in controlling your movement disorder. If you cannot get to a doctor, you can obtain antibiotics prescription-free from the online pharmacies listed in this post.
     
  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Is that the Environmental Health Clinic at Women's College Hospital?
     
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  11. btdt

    btdt Senior Member

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    No they do no treatment at wch they only dx may make suggestions to your family doctor.
     
  12. btdt

    btdt Senior Member

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    @Hip
    Yes it was plain old amoxicillin 500mg for 7 days both times this drug stopped the jerking.
    I looked
    "
    Atlas of Endoscopic Sinus and Skull Base Surgery
    https://books.google.ca/books?isbn=0323044085
    James N. Palmer, ‎Alexander G. Chiu, ‎Nithin D. Adappa - 2013 - ‎Medical
    ... amoxicillin/clavulanate and cefuroxime and between amoxicillin/clavulanate and ... been attributed to their antiinflammatory and immunomodulatory properties ..."

    Interesting as i have had many infections since the head drop and leg dragging came in 2006 one of the drugs at the time was amoxi/clav... i took one got in my car to take a day trip and had to be taken by ambulance to hosp... for the day. The ambulance driver said it looked like organophosfate poisoning had i been to a farm... i hadn't.
    As I sit here i am trying to recall if the leg dragging head drops were before or after this and I can't recall... not now anyway.

    It looks like amoxillin can.. or I read it wrong i am used up for today reached my limit...
    the other one mentioned i had many times cefuroxime... I finally had a n anaphalaxic reaction to it after many treatments with it...

    I am beyond confused and useless now I will be back...
    I wanted to read this but it is too late... today
    for later
    http://www.acsh.org/wp-content/uploads/2012/04/20040426_mcs.pdf

    @scottryguy
    the place is in Ottawa ... I tried to get the first page but nope had this open it should be enough to fin dit
    http://www.oehc.ca/treatments/treatments.html
     
  13. Hip

    Hip Senior Member

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    Amoxicillin can potently reduce extracellular glutamate levels in the brain, and that may be why it helped your movement disorder. See this thread for more info, and for other ways to reduce brain glutamate levels, or reduce the effects of high brain glutamate.
     
    Last edited: Apr 19, 2017
  14. justy

    justy Donate Advocate Demonstrate

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    Yes, I have it! I have MCAS and before we knew that I was having jerking issues for a few years. Since being on meds for MCAS the jerking has stopped UNLESS I have a strong reaction to a smell, chemicals, drug etc.

    If I have a severe drug reaction the jerking is so severe if looks like a seizure and goes on for hours.

    Now If I suddenly get an arm flinging up I know there is something I am reacting to. I haven't met anyone else with this in the way I get it. I also have Lyme and co. But the only thing that stopped this for me, unless in a reaction was long term daily double dose antihistamines and ketotifen.
     
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  15. btdt

    btdt Senior Member

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    @justy your the only other person in the world I know of who is like me. If you are at 23 and me I would like to compare our dna... if I could sort out how to do that... there has to be a reason.
    Do you take supplements? Do you take in particular glutathione I have not seen anyone else with this on their sup list.. it is what I use a lot of when i am in a reaction seems the antihistamines don't work so well for me. I once took enough to knock me out only to wake with a mouth full of blisters it had not worked.. so being hosp adverse (they don't know what to do with me and I end up with more drugs and more reactions) when I woke I took more benadryl... for some reason it worked rather quickly. I was told to try reactine... can't recall what happened.
    Last reaction was mild and yesterday I took sudafed and a ton of detox supplements... @Learner
    I have upped my dose in some cases tripled the dose of supplements to match what Learner takes... tho I did not see glutathione on her list either.... it was slow but it was only one mouth blister and it worked without too much side effects. I was taking sudafed when I was on the antibiotic too... add it all up I guess I got something here If I can sort it and remember it.
    Going to check some posted links thanks for all your help...

    I can start with an arm too or a leg or spine jerking I never know how it will go or what it will be.
    What sort of a doctor do you have? I have a dx but no treatment are you seeing a naturopath or another sort of doctor... have I asked this already... a neurologist? Ok I am getting ahead of myself.
    I am leary of antihistamines because for the last ten years of antidepressant withdrawal.. I suffered hard. Benadryl seemed to help with insomnia that was unending BUT the down side would be increased akathisia I can't spell it and can't waste too much energy on it .... it is worse... bad worse than all this as a lot of people don't survive it... internal insanity no peace at all. That is what would get worse after I got a sleep for a night this would come back and I would be set back wks or month in the withdrawal process.... which was really living in hell.

    They scare the shit out of me.... antihistamines did and do for the delayed reaction after I take them... or the not taking them since my body does not react like others. when I had anaphylactic what use to work with half a benadryl ...did not respond to 3... I kept swelling... blotching... it seemed to have not affect at all. I went to a clinic waited... they sent me to my own doc..just upstairs.. who sent me to the hosp since I did not want to take prednisone as it causes my brain to shut down.... the hosp made me take it...

    I have also been told I was reacting to epinepherine when I was at the dentist and tho I have an epi pen..( which is in my purse 200 miles away I forgot it there ) but I am scared to use it too.

    I am getting caught up in the fear or intensity of this and I need to step down now and go see the posted links.

    I am looking for ideas...
    explanations it seems I may finally be in the right place.
    Thank you all.
    ps the anaphalxic was to cetaphil not the drug stated but I think it is that family as cefuroxime I think... but am not sure. That was in Nov 2015 and I refused any antibiotics since shortly after I was told by one doc he suspected a seizure disorder but could not treat me as I was too reactive ... I was reacting badly to food by this time. He said increase magnesium and don't take anything... so I did. I got till the last couple of months without an antibiotic... then had two courses of azithromycin and two of amoxicillin. The mouth blisters swelling body jerks... all came after this.
    I have video I took at night because I wanted to know what happened at night I also wanted to show it to that doctor but could not edit it right... erased a lot of it. I have odd things all night long or did a year ago I have not done it lately. It seemed like I had breathing issues in the night too... jerking all night hit and miss... not much real sleep.
     
    Last edited: Apr 23, 2017
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  16. btdt

    btdt Senior Member

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    Because Ketotifen has the ability to stimulate the appetite, it has been studied for use with wasting conditions. In the most commonly referenced study examining this property, 22 AIDS patients who were administered Ketotifen and Oxymetholone, 18 gained an average of 11.4 pounds after just under 4 weeks (1). Further research proved Ketotifen to be a TNF-alpha blocker. TNF-alpha lowers testosterone and IGF-1 levels immensely (2,3) while strenuous exercise raises TNF-alpha levels (4). TNF-alpha has also been found to inhibit the muscle's ability to uptake glucose, (which is known as insulin resistance). It has recently been discovered that hypogonadism and low testosterone are also associated with elevated TNF-alpha (5).

    will sort it later...
    Ketotifen and its ability to lower TNF-alpha, is a very valuable tool. You see, Hypogonadism (low testosterone) often accompanies elevated TNF-alpha levels (6), and after a cycle of anabolic steroids, you are going to be in a hypogonadal state, with elevated TNF-alpha. Thus, taking Ketotifen with your PCT is probably a very good idea. I recommend 1-3mgs/day before bed because this stuff will make you pretty drowsy.
    (this is from a body building thread I don't always trust articles from drug companies and like to see what real people have to say about things in real life. ) it is my antidepressant history hang over... I can't help it. I learned everything the too hard way. I am tired of learning the hard way it costs too much.

    I don't do these either.. can't tolerate salbutamol.. use only in a crisis.

    Other studies with salbutamol (also referred to generically as albuterol) showed that beta adrenoceptor downregulation caused by long-term use of this beta-adrenergic agent could be rapidly reversed with as little as 2mg of ketotifen fumarate per day.

    It could be that long term use of norepinephrine in effexor burned out some things in my brain body and now... I can't touch it. Even after years of being off it I doubt I would respond like a normal person.

    wiki
    Besides its anti-histaminic activity, it is also a functional leukotriene antagonist and a phosphodiesterase inhibitor.
    https://en.wikipedia.org/wiki/Phosphodiesterase_inhibitor

    not sure I want to play with this...
    more bodybuilding resources I am like that...
    http://canadianjuicemonsters.net/fo...sion/57568-ketotifen-not-sure-where-post.html
    need script to get it in Canada if I am going to go rogue buying online drugs I will do careful research first ...
    man it is hard to learn to be a doctor and pharmacist both with brain fog... smart ass.. yes.

    going to read about glutamate.... and amoxacillin
    I have L glutamine did not fancy it...
    there is so much to learn...
    Thank you all again
     
  17. btdt

    btdt Senior Member

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    L reuteri I took this and it helped me once
    " Supplementation of Lactobacillus reuteri cultures with histidine has been shown to increase histidine decarboxylase expression, as well as production of histamine [93]. Interestingly, Lactobacillus reuteri inhibited production of the pro-inflammatory cytokine tumour necrosis factor (TNF)-α in myeloid progenitor cells through production of histamine [93]. This inhibitory effect of Lactobacillus reuteri upon TNF-α production appears to be dependent upon activation of the H2 histamine receptor and, subsequently, activation of the MEK/ERK mitogen-activated protein kinase (MAPK) signalling pathway. This immunomodulatory role of histamine may help to explain why histamine is required for controlling infection in the enteric nervous system [94]. Furthermore, blockade of H2 receptors has been shown to reduce mucus production and lead to an increase in gut barrier dysfunction [95]. Thus, alterations in histaminergic signalling in the gut may contribute to translocation of bacteria from the lumen into the systemic circulation, which is thought to occur in conditions such as IBS, depression and autism. Diet may also influence histamine production through modulation of the gut microbiota. IBS patients fed a diet composed of low-fermentable oligosaccharides, disaccharides, monosaccharides and polyols (FODMAP) reported an improvement in their IBS symptom severity score, which corresponded with an increase in Actinobacteria richness, as well as a decrease in urinary histamine levels [96]. This association between diet and histamine levels is potentially quite important for the treatment of IBS, given that elevated levels of histamine have been documented in patients with this gastrointestinal condition [97]. While the microbiota have been shown to influence local histamine production in the gut and in the circulation, more work is required to determine whether they can influence central histaminergic transmission."
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5078156/

    I read about it here
    https://cfsremission.com/2013/07/13/lactobacillus-reuteri-and-recommendations-on-how-to-take-it/
    this is to be taken with glutathione...
     
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  18. justy

    justy Donate Advocate Demonstrate

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    I had SEVERE akasthesia that lasted intensely for a about a year, took two years to calm down - 5 years to go altogether. It happened after just two doses of an SSRI for misdiagnosed depression. I have no idea how I got through those years - it was literally a living hell and I lost LOTS of weight and spent all day being tortured. Nobody did anything for me - it was awful.

    I don't see how 2nd generation antihistamines are linked to akasthesia though?

    Prednisone at only 5mg caused me severe suicidal ideation. I cant take it as I get borderline psychotic - cant eat as food seems disgusting. Last time I had to have a course for my lungs I couldn't even watch other people eat as it made me think they were disgusting for eating I lost a lot of weight. Im sure these werid reactions are all part of my MCAS.

    I see an M.E dr - kdm IN Belgium, BUT am now going to see a mast cell specialist in the UK.
     
  19. btdt

    btdt Senior Member

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    @justy
    We have very close starting stories. I had leg pain from a mva after a few years of not getting better the pain was treated with prozac. I took it a short time a couple of wks maybe a wk... I went insane had hallucinations became suicidal. Managed to not go to the loony bin by the skin of my teeth. Fallout I could not get up had pain everyplace not just in my leg ... could not sleep .. ended up in a pain clinic a few years later when my functioning had degraded to complete bed.. on a study of my system for the pain clinic I was upright 2 hours out of 24 long ago... when I was young with a young child.
    The pain clinic treated me with more antidepressants... which I remained on for 18 years...
    I have a long withdrawal story was at paxilprogress and surviving antidepressants same handle I have here.
    I think the prozac broke my mitochondria caused the fm.cfs... I do believe it can I prove it no... but I believe it.
    They still give people SSRI drug today for pain... I can't believe they do that. It is such a horrible idea that can give a lifetime of suffering. It did not work either which is worse it cause more pain. Years of more pain.
    Not to mention where I am now I have not been the same since taking prozac.

    To add insult to injury my 23 and me test evaluated by another program stated I would not respond to any ssri... that did not stop the side effects or severe adverse reactions. For years I did not know it was a SAR I had to prozac that made me crazy... I took more pills so that would never happen again. I was such a sucker.
     
    Last edited: Apr 23, 2017
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  20. btdt

    btdt Senior Member

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    @justy
    "I don't see how 2nd generation antihistamines are linked to akasthesia though?"

    I don't know what generation they are as I am not that detailed.. things may have changed since wd of ssri drugs but there was a time while my body was trying to heal from wd that I could not take them rather I could take them they would help but then I would be set back a long way in my healing with previously recovered from symptoms returning.

    This is what I gather after years of playing and searching... ssri drugs were developed from a base drug which was an antihistamine... whatever that is worth wiki can tell you about it...

    My experience while in ssri withdrawal
    after days of not sleeping I infrequently took a small bit of a benadryl tablet this small amount was enough for me to sleep some. Once I slept I would wake up and have symptoms I thought I was done with come back... there were so many symptoms all hellish. akathesia would be worse... down a level closer to hell... it would take a long time to suffer thru that and get back to where I was before I took the benadryl for that reason I took it very rarely only when I thought I was about to be or already was psychotic would I chance it.
    I don't know why this is and the light dawned when I learned the base drug for ssri's way back was an antihistamine... what I don't know and maybe science don't know... my body knows. I can't explain the connection any better. It seemed to me my body was reacting to the drug as it would a ssri...

    I was hypersensitive to everything then food all things... all drugs. This is the conclusion I came too... hair of the dog when push came to pull but I would cost me.
    It could very well be the wrong conclusion,
     
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