I hope this post finds everyone as well as they can be right now. I need your help.
I have Multiple Chemical Sensitivity (MCS) I have lung disease, as a result of Lupus. I also have diabetes, hyperparathyroidism and high blood pressure.
Having MCS makes me hypersensitive to almost everything, chemicals, perfume, any strong smell, most household products. I am also sensitive to some foods. I react badly to any of afore mentioned. They body reactions, such as increased blood pressure to dangerous levels, increased heart rate and increased pulsing around body, itching and the smells cause pain in my lungs. I am also very sensitive to meds and have very bad reactions to them. My body goes into flight or fight mode when i encounter them. Also my sense of smell is so hightened now, i am like a blood hound and can smell an offending substances a great distance away. In the last year it has become unbearable and is really affecting my quality of life. I am on prednisolone, Hydroxychloroquine and diabetic meds. I was Just wondering whether anyone has experienced this, if so how have they dealt with it, have they found any meds that have helped? I am getting to the point where i am loosing the will to live, because it is such a blight on my life.
I would appreciate your response and any insight you might have.
Thank you.
Written by
field
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You get a lot of understanding the quality of life issue from me. Any time you have hypersensitivities to so many things you regularly encounter, life is a challenge.
What are your doctors saying? Autoimmune disease doesn’t really cause hypersensitivity but certain problems related to autoimmune disease can. It is a major work up medically but one you need in order to know how to move forward.
It’s funny you write when I just got back from a neurology visit. When I was describing how my heat intolerance comes on as such an immediate response, he said “We usually think allergy/immunological reactions or the autonomic system.” Well, we know I have dysautonomia so he can try to alter the response through certain medications.
Autoimmune disease can also affect the mast cells and lead to a particular sort of mast cell activation disorder. You may be tested for these conditions after allergy testing.
I hope this is helpful. You shouldn’t have to live without knowing what you are battling. Would you ask your GP for a referral to immunologist?
Thank you KayHimm for your response.I have done a little research into mast cell activation, my symptoms, seemed to point to this. The research said that taking the antihistamine cetirizine should help if it is MCA. I took cetirizine each day for 2 weeks and it didnt make a difference, it only made me feel very unwell, so I am not sure now. My GP has made a referral to UCH allergy clinic and i am currently waiting for an appointment from the hospital.
Have they given you any indication of what might be causing your symptoms, and have they offered you any treatment?
Yes, after patch testing and evaluation for mast cell disease, the diagnosis was autonomic dysfunction. Apparently these nerves and masts cells talk to each other so people like us can look a lot alike.
That is terrific you have a referral to an allergist. They have to first rule out any regular allergic. The immunologist will know what comes next.
The big thing no matter what the cause is avoiding triggers. I cannot stress this enough. I went from practically home bound to back to baseline by avoiding everything that was causing a reaction. Use baking soda when in doubt concerning a cleaning product. I have been known to even wash clothes in it if I couldn’t get hypoallergenic stuff.
If you notice reactions from new products that have a chemical smell, tell the allergist. Chemicals coming from China and other countries are treated with things to counter rodents. They are horrible for us.
Note whether you are light-headed when you go from sitting to standing or if you feel unwell after standing for a long time.
The antihistamines didn’t help me either. Important information for the immunologist. Remember immunologist know a lot about lupus. So you will be in good hands.
Thank you for that information, it is very interesting reading, I hope with all the research now being done oncthe subject that rheumatologist will take it more seriously, i have been complaining about this to my rheumatologist for years and it just hasent been taken seriously. As result it has just gotten worse over the years to the point of being unbearable. I am sure many lupus sufferers have simillar experience.
Hi, sorry to hear all you are going through. I see you've had a referreral to UCH. Is that UCLH London? If so, RLHIM (Royal London Hospital for Integrated Medicine) is part of the UCLH and is the very best place to treat MCS with probably the best immune allergist in the country. I see the Lupus group at UCLH but all the rest of my treatment is at RLHIM, have been there 20years. Totally different way of treatment, all natural ie homeopathy, herbal ect AND its NHS. If that's where you are then you can get help. If not, its nationwide funded and you can be referred. Good luck
Thank you for your response Largather,Yes I have been refered to UCLH London and am waiting for an appointment.
Is the RLHIM Hospital the one in White Chapel?
Did you get your referal to RLHIM from UCLH? Are you being treated for MCS there, If so how has the treatment helped you, if you dont mind me asking?
I have started some homeopathy recently, eventhough she gives me a concession, it is still very expensive. Due to the expense I dont know if i can continue to having it, so a referral to RLHIM would be great.
Thank you so much for your imput, sorry about all the questions, this gives me a glimmer of hope.
Hi . RLHIM is in Queens Square 5min walk from UCLH . Its situated next to National Hospital for Neurology and Neurosurgery and also next to Great Orford Street children's hospital . I lived in a chemically contaminated house, which made me very ill and infact brought out my lupus. I was successfully treated for the main chemicals and now I have to be careful but I live a normal life regarding the chemicals. As I say , I'm still treated at the RLHIM ( use to be known as the Royal London Homeopatic hospital) and infact its my main hospital for everything. And the treatment there is the reason Im able to take very little meds forl lupus. Your Rheumy can refer you or your GP. Im at UCLH for lupus and the National for my Neurosurgery. Its 1 group and they all work together. Look it all up, and Dr Saul Berkovitz is the guy you need at RLHIM . Might be that your referral to UCLH might even be passed onto him. Also , because of my previous contaminants I'm allergic to loads of med ie can't take any other brand of hydroxychlorequine except Zentiva , no sulphur not even thyroxine ect. So I'm treated by RLHIM and my thyroid no problem now at all. Really is a very good hospital
Thank you so much for taking the time to reply, i really appreciate it.
Like you i am allergic to so many meds, I cannot tolorate any other brand of medication but the ones i am taking, any brand changes makes me very ill, so its very scary when my pharmacy cannot locate the brands I need.I will certainly see if i can get a referral to the homeopathic hospital to see how they can help me.
Hi largather,I posted in Jan about my chemical sensitivity, you kindly provided me with some info about the RLHIM and that you saw Dr Saul Berkovits there for your chemical sensitivity.
A referal was made for me by my GP to UCLH & RLHIM, however the referral was rejected on the grounds that they do not treat chemical sensitivity? I was also told by UCLH that Dr Berkovits does not administer homeopathic treatment. Can you shed any light on this for me, as i am not sure how to go about getting a referral, because i am confused as to where the referral should be directed.
Hi, you've been given totally wrong info. Dr Saul Berkovitz has been at the RLHIM since 1996. He is the Clinical Director of the whole hospital, heads the Adult Allergy Service and the Integrated General Medicine Service. He uses all treatment especially homeopathy and herbal, acupuncture ect. Has a full team of highly trained doctors under him trating a vast amount of conditions from Chronic Fatigue, MS, Rheumatology, Immunological , Cancer ect. All using homeopathy and other Integrated therapy treatments. So I cannot understand the response you got unless it went to the wrong hospital. Put his name in Google, go to his RLHIM page, it has his email, number ect and his secretary info. Contact them direct and take it from there. Maybe your GP is mixed up with the contact info?I'm in the National at presenthad my Neurosurgery last Thursday and I'm on Dr Berkovitz prescribed homeopathy post opp meds.
Thank you so much for your reply. It was the admin person @ UCLH, she was so adamant that he didnt do homoeopathy and got quite cross when i insisted that he did.So thank you for clarifying this for me and providing further info.
I just wanted to add, I hope your neurosurgery was successful, I dont know what it was for, but I wish you all the best and a good and speedy recovery from your surgery and for taking the time out in your hour of need to respond to my post.Thank you, u gave a heart of gold.
Hi Field, I agree with the others re: getting the doctors to figure out the route of all your health problems and sensitivities. I have Lupus, fibromyalgia and CFS. When. I've Lupus for over 30yrs, but fibro/cfs for only 14yrs. When I first started getting symptoms of cfs, I was so ill I became housebound for 3-4 years. I started an online program, which involved NLP, meditation etc. This program really helped me. It also helps people with MSC. You may want to check it out.Its called The Gupta Program.
Thank you Lily25 for your response,This is very interesting information. Can i ask how have the treatments you have received from this alternative therapy helped you?
It helped me look at my health in a new way.Instead of thinking I can only be happy once I'm better, the program encourages you to accept the situation you are in and anything else is a bonus. At first I thought he was talking nonsense, I had been housebound and sofa bound for 3 years. But once I stopped putting pressure on myself, I did start to feel better.
The NLP side is 'retraining ' your brain. The theory behind CFS, MSC is that your brain is stuck in a 'loop' ie the Amygdala thinks you're in pain/trouble even though you're not.
The program also taught me about meditation and mindfulness.
The person who runs the program deos not have a medical background, but I went into the program thinking I had nothing to lose.
It's not very expensive, you do the program from the comfort of your own home. There are weekly webinars for 12 weeks.
Hi field, I forgot to mention. When you look into the Gupta program, ignore the bit when he says he can 'cure'. There are no cures for these condition, but by changing certain thoughts and lifestyles, you may have a better quality of life.Apart from that, I found the program very good.
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