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TOPIC: MCS update

MCS update 7 years 2 months ago #1

  • Kcall07
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Hello all,

I haven't written on here for ages so thought I would write a quick update to let everyone know how I was getting on.

I had severe MCS for eight years, and eventually recovered completely by taking the anti psychotic medication Amisulpride. I was taking 100mg a day. I noticed an effect almost immediately, and was 100% better in two months. I have have now been better for about three years, but I still have to take the medication.

I'm not sure the exact explanation of how it works, but it's along the lines of calming down the limbic system of the brain, similair to the brain training excercises.

I started on 100mg a day, then after about two years I halfed it to 50mg. Then after another six months I halfed it to 25mg. Just to put this into perpective, a mental health patient will require 800 - 1600mg a day. The dose is tiny.

Then recently, the amisulpride caused me to have raised prolactin, so I switched to one called aripriprazole. I started at 5mg, and have now taken it down to 1mg and am still symptom free. It is difficult for me to lower it further as the size of the tablet now is tiny, so I have started not taking it every third day.

Im am just trying to get the dose to the minimum level i need to keep me well. Is it possible I dont need it anymore? I guess at some point i will find out and be sure to report my findings here. The effects of medication can continue for up to two months after changing it, so experimenting takes a long time.

Anyway just thought I would share my experiences with everyone here. My best wishes go out to everyone with this terrible illness. when I was ill there was no mention of any of these brain training programes, now there awareness is growing and growing. It's my opinion that it wont be long before a definitive answer is found. So hang in there.

Kcall
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Re: MCS update 7 years 2 months ago #2

  • CaptainInsano
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thanks for sharing, Im tempted to give it a go, just need a willing doctor. I imagine it fits in with palls theory.
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Re: MCS update 7 years 2 months ago #3

  • Maff
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Hi Kcall,

Thanks for keeping us updated on your progress. Great to hear you are still doing well!

I often see people suffering with MCS (understandably) complaining about a lack of recovery stories so I'm sure many will appreciate you taking the time to post here about your improvements - especially as the treatment you have had success with is so unusual.

From my experience I found that I could lower the dose of things that helped me and maintain my tolerance fore chemicals and eventually when I stopped taking anything at all I remained free from MCS. Hopefully the same will be true for you. Fingers crossed!

I believe you are spot on about the mechanism by which this medication is helping you. It will be inhibiting the excessive and dysregulated neurotransmission in the limbic system which it seems is associated with MCS. Interestingly my own recovery seemed to really pick up pace when I began supplementing with DHEA - a neurosteroid which like your medication decreases neural activity and is likely to increase the threshold at which the limbic system responds to stimuli, thus reducing sensitivity to chemicals and many other things.

The brain retraining techniques that have become popular take advantage of 'neural plasticity' - the ability of the brain to alter its function, and even its structure through the "rewiring" of neural circuits. Neural plasticity can be seen as the reason why MCS develops (chemical injury causes hypersensitivity to future exposure) but also why such techniques can help recovery by retraining the limbic system to respond with a normal level of sensitivity.

Interestingly, it is not only brain retraining techniques that can take advantage of neural plasticity but substances such as drugs, hormones and nutritional supplements can too. So in a very different way your anti-psychotic medications and the DHEA I used are actually achieving the same end result as the brain retraining exercises.

Since I have been MCS-free for 7-8 years now and have since obtained a degree in nutritional medicine I am actually currently in the process of writing an eBook that goes into these mechanisms in detail and also outlines and logical approach to treatment, not just for MCS but also ME/CFS, fibromyalgia, and other invisible illnesses. Techniques such as brain retraining or use of medication/supplement alternatives is just the final step after the causes for the limbic hypersensitivity have been addressed. It is called The RADD Protocol and I hope to have it finished sometime in the Spring.

CaptainInsano - You are right. The limbic hypersensitivity hypothesis and Pall's hypothesis of oxidative and nitrosative stress actually tie together perfectly since such stress triggers elevated levels of pro-inflammatory cytokines (immune signaling chemicals), for example, which have been implicated in causing limbic hypersensitivity. I believe Pall's Protocol, brain retraining, and the anti-psychotics and DHEA used by Kcall and myself, are all treating the same root cause but from different angles.
If you are going through hell, keep going - Winston Churchill
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Re: MCS update 7 years 2 months ago #4

  • Chris.S
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This is really interesting re: the limbic system etc. Never heard of anti-psychotics being used for MCS or CFS etc. What I'm wondering is how one tolerates these type of meds with severe MCS. Mine is so severe I cannot tolerate panadol (paracetamol/tylenol), most pain killers etc. Due to an extremely poor detox system.

I've actually just been in hospital for 7+ weeks due to a great worsening of my condition. They couldnt find why I got worse all of a sudden so have no treatment for any of it. Seems like a gut breakdown to me, but everything including allergies & chemiccal sensitivites got drastically worse. All of a sudden I can barely tolerate a thing anymore, like ive become allergic to the earth.

Anyway as mentioned can't tolerate most drugs due to the poor detox factor. I've tried about 7-8 different anti depressants from the SSRI, SNRI and tricyclic groups, and could not tolerate any of them. Even 1/10th of a tab/capsule gave me awful intolerable side effects, whether it be increased fatigue or severe nausea and shaking etc.

I wonder how you tolerate other drugs having MCS? Are drugs something different for you to chemicals? Or are these type (ive never tried them) more tolerable? I guess there are different mechanisms for some people for their MCS. Mine is just terrible detox which is extremely frustrating! Otherwise, this treatment sounds great and something well worth trying. Glad you're getting well!
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Re: MCS update 7 years 2 months ago #5

  • Maff
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Hi Chris,

Sorry to hear about the recent worsening of your condition. I can relate as a severe breakdown in my gut ecosystem and subsequent liver toxicity led to a severe worsening for me also.

On the subject of drugs and MCS, I actually found that besides DHEA supplements being instrumental in my recovery that when I was having an acute reaction to chemicals if I took a fast acting benzodiazepine tranquilizer like clonazepam - it really helped with many of the symptoms. Now I can see it would be easy for an outsider to say I didn't have MCS - I was suffering from panic attacks - but there is a huge difference between the two, as every MCSer knows all too well!

I think what we need to remember is that everyone is different and that goes for two MCS sufferers as much as any other two individuals. Certainly, many cannot tolerate any drugs at all so the treatments we're discussing here will clearly not be an option. For those who can tolerate drugs it may be something to consider. Personally, I was acutely sensitive to airborne chemicals but did not react the same way to anything ingested.

On the subject of poor detox and drugs...not all drugs are the same. Some are not metabolised at all by the liver or other tissues and some (e.g. antibiotics, steroids etc) put a huge strain on an already overworked detox system. I have ended up with toxic hepatitis (with white stools, nausea, sweating, abdominal pain and jaundice) from the antibiotic ciprofloaxacin (and also hydrocortisone) for example, but benzodiazepines, antidepressants and anti-psychotics have not caused any problems. Oh and like you I cannot tolerate any painkillers as they cause gut and liver inflammation.

It's often a matter of recognising the symptoms and trying things - starting with very small doses to see if you can tolerate them.

You might find these articles helpful with your liver issues:

Pathological Detoxifiers and Environmental Illness

Antioxidants and Liver Supplements

All the best!
If you are going through hell, keep going - Winston Churchill
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Re: MCS update 7 years 2 months ago #6

  • jimg
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I got sick 2 years ago and have slowly been getting better from avoidance. My experiance is a bit different as both me and my wife got sick thru this we have been able to judge different reactions to different things from 2 different people at the same time. Now medication was not well tolerated by both but I have seen many use it with success. I have noticed that MCS comes at you in different ways you lack the abiltity to detox and you also get more of a reaction from stress and the release of chemicals within your body from this stress. sometimes being around chemicals can be just as bad as being under stress. I think no matter what if you avoid exposure to heavy amounts of chemicals you will detox enough to get back to your "normal" as far as your immune system is concerned. If you bring in chemicals like drugs you may condition your immune system to stay calm during this time frame but you could also stop the detox and delay the need to cleance your system. now after this 3 year detox some still remain sick a small % is because they lack the tools to detox vtiamins or minerals and so on or have lost the abilitly to do so thru damage to the body....the major amount of people that are still sick is because they have trained thier body to react to these chemicals and it is now an emotional/mental responce that has been hard wired to your body. In these cases drugs will help break those bad mental habits. almost the same as a person with anxiety disorders can break them thru medication. The reason I say all this is medication itself can cause MCS as it is chemicals and allthough this may bring those that need re-wiring relief it may be horrible for those that are in the process of detoxing or have lost the ability to do so....We lack good doctors that can tell the difference....I have heard awful storys of people who were on the way to recoverry and started playing around with medications only to find themselfs years later unable to take medication and very sick compared to when they started taking it. always keep in mind the fact that these things that make us sick in seconds are also slowly making other "normal" people sick over time. And if they get cancer from these products medication will also be the answer for them. seems like chemicals will always be the answer to the chemical problem well isnt that sad for the environment but very proffitable for the chemical companys
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