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What causes ME?
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Music and Immunity
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Five Keys for ME
Carbon Neutral ME/CFS
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QUESTIONS AND ANSWERS
If you want a question answered, please email me, and I will answer it online and on this page for the sake of other readers.
What do I do if I start getting skin problems after starting the garlic?
Skin problems are depressing at the best of times and you will want to get rid of them (by the way live natural yoghurt applied overnight is a 12 hour remedy). The skin problem may be caused by die off of the toxins in the digestive system. You will have to judge it for yourself. You must slowly get rid of the poisons in the body and skin problems may be one way of doing that. I would stop the garlic for a few days and start at a lower dose. Raw salads also kill bad bacteria in the gut. I would start with raw salads first and then go on the garlic gradually. There is nothing that can harm you in the treatments advocated on this site e.g. in raw salads (see recipes) or in garlic in smallish amounts (unless you are allergic to either in which case you might get some exacerbation of the ME symptoms from that). But test carefully and use your common sense. Drink a lot of pure water to cleanse the system.
Should I stop all other treatments - like colonic irrigation?
Yes. I warn people against doing anything else, apart fom the dietary and allergy treatments on this site. We just do not know the outcomes of colonic irrigation which may deplete the natural reserves of the body, if taken to extremes. I would not take garlic and have colonic irrigation at the same time. That is too much for the digestive system when one is frail. I would stop all drugs and other treatments and just stick with this dietary and allergy treatment. Anyway it is cheaper.
Can I take painkillers e.g. like Ibuprofen for headaches etc during this treatment?
No, avoid all drugs. I never take
painkillers as many have side effects like internal bleeding. You do not want an operation in ME. I never even take an aspirin for a migraine. If you have to take paracetamol take only the lowest possible dose or less. People with ME overreact to drugs anyway. If I get a migraine I lie down and hold my head up at an angle and that seems to calm the pain.
What vitamins should I take?
You should take allergy-free vitimains and minerals. I have always taken
Lamberts vitaimins and minerals
without ever having an adverse reaction. Personally, I used to take one Lamberts "Health Insurance Plus" pill each day, with food tough you ahve to weight up reent research that seems to show that taking vitamins raises your risk of mortality by 6% (all except for selenium). I would try to get all my nutrients from food, even selenium from organic brazil nuts.
If I cannot sleep what should I do?
LIsten to music (see "
") to make you sleepier.. If that does not work, take your temperature for three days every hour and plot a graph to see what is happening. Basically, melatonin which makes you go to sleep, should make you sleepy about 6 hours after your temperature peaks, which for most people is about 5pm. Identify, if you can see when the peak of your temperature is, then try to sleep 6 hours after that. Training the body into a pattern is helpful. Gradually train it into social hours. Go on monitoring your temperature. Getting real rest is crucial to getting better from ME. Rest comes first : sleep during the day if you have to.
If I feel really low, what should I concentrate on doing about it?
If you get into a state of real depresion, consider whether you should see a helpful doctor. But be warned: some of us refrain from ever telling doctors that we feel reactively depressed, in case we are regarded as having some psychiatric illness (this could be forcibly treated). In the early days of ME, there were tragic cases of people being given ECT (not anymore I think). We did not want to be labelled. If you are just feeling frustrated and isolated, ring or email someone who can understand, telling them how you are feeling. This will relieve the worst of it. Start a diary in which you express yourself : do not bottle it.up. Get treatment for severe reactive depression but take care not to get a label. After all, the problem is not depression in itself, but your condition which is making you depressed.
Many food allergy laboratories have been discredited. Where should I go for a test?
Personally, my list of food allergies were both right and wrong - but I tested the foods that were confusing me. One can find out doing that what one is relly allergic to. The blood tests that I had were helpful on the whole. That was a long time ago so I would not recommend anywhere now. I would not trust any allergy test that did not look at the blood.
What kind food desensitization should I have?
I would not say that you should do what I did (EPD treatments even though it helped me a lot) as it is only successful in 1 in 4 cases of ME: But I would search for another kind of desensitization treatment with a good track record for foods, of the same type as EPD. Or I would study the whoe issue of T cell balance and ask questions of immunologists. At any rate, if a treatment did not have results after a couple of months, I would stop and get other expert advice. The immune system should be treated with care. You will not want to imbalance the T cell ratios any more. Instead you want to correct them. But I would go on researching...
Can ME/CFS prove fatal?
Yes. In several ways. First, through sudden low blood pressure. A 74 year old friend of mine, Olwyn, who kept me going through during a very difficult time, passed away suddenly after getting up to do a little gardening, having been in bed for 10 years with ME. The effort was too much for her. I think her blood pressure dropped (Dr Cheney's theories on the "What Causes ME" page may explain it): Another way is through dropping off to sleep, say in the bath (which claimed another ME sufferer). Some poor souls under dreadful pressure from the medical profession, or abuse from nurses or disbelief from family have in the past committed suicide in ME (though this is not common). One took her life after being given electric shock treatment in ME, another took an overdose after a nurse abused her in an out patients about ME, another high flying man took his life, after living in isolation for soime years. One dear friend, Martin, took his life after becoming mentally ill. He overdid colonic irrigation to treat ME (he had bought his own machine to do it every day) and depleted his body of essential minerails and vitamins. It is entirely due to his support for my work that "Young ME" came into being (now the Tymes Trust). All of these people are remembered by those of us who survived as "honourable and vindicated". We will not forget them. Olwyn and Martin would have been delighted at this site, as it existence owes much to them.
I went on a shopping trip last week and after following your advice on this site for some months, I was pleased with what I could do. But I have "crashed" and I am back to square one. What is your advice?
I am afraid that you made a common but serious mistake in doing 110% of what you are able to do. At your stage, you should do about 50% of what you are able to do. The ME rule is "Do 70% of what you are able to do". This leaves the body with the 30% capacity to recover or keep up with the depleted energy supply, which is what it needs. You main objective is to protect your immune syystem which is over stressed by muscle exertion. Pushing muscles drains the immune system. The annoying thing is that you dont feel it at the time - but about three hours or more after the exercise. There is a delayed "crash". So it is very difficult to judge whether what you are doing is too much. I would always err on the safe side. If you have started to treat your condition as set out in this site, you wont go back to "square one" as the advice on this site is treatment. But if you have ME, you should never execise again (other than walking) and even that for more than short distances, not until you are much fitter If I feel under any stress (I now climb mountains) I immediately think of an "escape route": because the whole question of overpushing muscles is a very delicate and finely managed thing in ME/CFS and getting it wrong still scares me. I rarely feel any strain even after climbing several hundred feet (slowly and with sticks mind you). If I do I simply stop what I am doing and go home by the shortest route (by transport if I can) and lie flat in the recovery position. Also if I stay up too late at night and feel drained the next day I make absolutely sure that either I secretly lie down at lunctime at work (I find a sofa) or I have about three nights good sleep to recharge. I still never take risks in ME. My energy is my earning power and I dont want to go "back there".
What is your view on vaccinations for people with ME? What would you do if you had to travel abroad to a country for which you're normally expected to have certain vaccinations? As a person who's lived with ME for so long, which risk do you consider to be greater- the risk of a relapse due to the vaccine, or the risk of contracting a disease because you decide to not get immunised? If you know of good medical journals/literature which offer sound advice regarding weighing up these risks then please let me know. I have a lot of friends and family who live in many different parts of the world and am wondering what I should do to prevent further problems- particularly as I feel my ME began with a trip abroad, from which I never quite fully recovered.
Health is all you have in life, believe me. There is nothing more important than being healthy. I would not go anywhere where I would have to have a vaccination. For me, this is not difficult as I do not have contracts in tropical countries. Of course, you might be able to risk not have the jab (in certain cases) if you take other precautions like not going to affected areas. I might consider that. I would still avoid malaria pills too, or at least get evidence from people with ME/CFS who had taken a brand to no ill effect whatsoever. I would test them in advance, as well, before I booked my trip. If I went to Australia, it would be across the USA, to avoid having any jabs. I would go through "jab free corridors". I would work it out very carefully in advance. I have even thought about a 'flu epidemic where everyone has to have a jab by law. I looked into this and found that there are some jabs suited for people with allergies. I would ensure that I booked for one of those! I avoid any drugs and jabs. I double check at the dentist that any injection is "adrenalin free". Vaccinations put a huge strain on the immune system. Like excessive exercise, they can damage you, seriously. You might also have a major allergic shock reaction. It is just not worth it. Also, have you thought about "crashing" with ME/CFS in a developing country and ending up in second rate hospital? I would not end up in hospital in the UK if I could avoid it! My advice is: go somewhere safe (even local) on holiday while you are ill and even then plan very carefully (see my
page for more advice). My doctor once advised people with ME/CFC to stay in the UK and "go to Devon to look at the green countryside". That's calming and comforting. How cautious I am: but this is what one needs to be - to recover from ME/CFS..It is the "risktakers" who do not recover from ME/CFS..
I have just had a diagnosis of ME confirmed. My ME doesn't see to be like what I have seen in other people, as I suffer from mainly neurological symptoms. I have written about my experience on my webpage
I would be interested to hear from others whose ME is like mine.
People might like to reply to this patient's own site but my view is that this sufferer could have ME/CFS. His flu jab depleted his immune system (see directly above) and one of the first signs of that can be altered skin sensation. I lost the feeling in my big toes: he seems to have parasthesia in the face. The dragging of the feet is very familiar for me in ME/CFS and a sign of immune weakness. I had it when my immune boosting injections ran out. I felt I could not lift my feet up properly. I had some very short dizzy feelings. I would say that the parasthesia on the face is an unusual ME/CFS symptom and that it should be checked out, as it could be another autoimmune condition. There would have to be profound fatigue, energy deficits not refreshed by sleep, cognitive difficulties, some muscle pain etc for this man to really be sure he has ME. But I think his symptoms are not outside the ME/CFS range. ME/CFS symptoms are weird and related to the immune system, which is very complex.
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