This article contains excerpts from the e-mail discussion – interview that have been conducted between members of MS email support group called MSCURED (http://groups.yahoo.com/group/mscured/ ) and Olivia, who’s girlfriend Ajay has MS.
MSCURED is free email support forum; main subject is MS and natural/alternative therapies.
- mercury Amalgam fillings
- How do you treat headache?
- Colloidal Silver
- parasites cleanse
- The most important steps
- HyperBaric Oxygen Therapy (HBOT)
- sugar and allergies
- Judy Graham & nutrition
- Loss of muscle mass?
- Toxic living (shampoo, soap, toothpaste)
- DMSA Chelation?
- supplement which seems to be very beneficial for energy
- Ajay has gotten progressively better as she chelates?
- Juice Plus & chronic eczema since I was 6 weeks old!
- magic bullets
- MS causes
- Colloidal Silver
- DMSA Chelation?
- TMJ & cranial sacral therapy
- long term view
- parasites supplements
- Mercury testing
- Allergic reactions
- Amalgam Removal
- MS Society, AMA & ADA
- Vitamin B12
- dietary changes
- Ozone and Oxygen
- test for mercury
- Pau d'Arco (Lapacho) Tea and Echinicea.
- Cannabis trials
- Parasites, Parafree, gluten
Subject: tell us more about yourself and about your girlfriend?
Date: Mon Apr 5, 1999 11:48 pm
Olivia: I live in Bristol, UK. My girlfriend, Ajay, was diagnosed with MS last year.
Q: What were her symptoms?
Her symptoms started with her face going numb and developed into massive fatigue, pins and needles in her face, head and feet, head aches and very achy and sore muscles all over - to name but a few. Neurologists gave her the standard line that there was nothing they could do and that she should come back when she was really ill and have steroids. This led us to pursue an alternative approach.
When she was initially diagnosed Ajay wasn't able to read or concentrate enough to get involved with any discussion, research or 'chat' of the sort we have and so I did it. Now, she is so much better she is able to do this sort of thing but, to be honest, I really enjoy it and find it fascinating and so I have carried on. She is quite happy for me to do this as it frees her up to do other stuff. The events of the last eighteen months have made me realise that I would love to retrain in the field of alternative medicine (initially as a nutritionist and then broaden out to other things).
Last March (1998) her face went numb down one side including her tongue and throat. She eventually went to the doctor in April (1998) and by the time she had had a MRI and been diagnosed with MS she was very tired, felt as though she had run a marathon and that she was walking over large pebbles (her words). She had a lot of headaches, pins and needles in her head and feet. She also had muscle weakness and pain in the rest of her body. She had absolutely no energy and spent the day on the sofa. Her symptoms started to fade as soon as she gave up sugar, alcohol and caffeine in late July.
She was pretty much symptom free by about April although her symptoms are directly related to the amount of sleep she has. If she gets a decent night's sleep then she is absolutely fine. Her sleep is dependent on all sorts of things including her diet, stress levels and what supplements she is taking. I should add that much to my irritation she is not completely strict about her diet - particularly the alcohol bit!
We have found that her MS is entirely controllable through changes to her diet and a general cleansing of her body. We found out that she had mercury and massive lead poisoning. She had her Amalgam fillings removed and is currently on a program of a variety of supplements to flush heavy metals from her body.
When she was at her illest she couldn't walk the dog - that was about 10 months ago. In September 1998 she started to play hockey again and by the end of the season (about a fortnight ago) she was playing twice a week! She isn't symptom free yet and has to be extremely careful what she eats. But - she is very nearly symptom free and feels fitter than she ever imagined possible.
Initially, she was advised to cut caffeine, alcohol, dairy and Sugar out of her diet. This made a massive difference but recently she had a food allergy test and that was really the icing on the cake! We discovered that she is allergic to things like carrots, which we used to juice by the pound. Having started her new diet she made a dramatic improvement.
We eat predominantly organic food, no meat and lots and lots of fresh fruit and vegetable. We have also learnt that eating raw food is very beneficial - i.e. raw fruit and vegetable. I eat the same as her and I feel fitter and healthier than I ever have. Also - we have both steadily lost lots of weight! At 5'11'' I could never get below 11 stone - and averaged about 11stone 5 pounds - probably a bit over weight. I now eat non-stop and am 10 stone 8 pounds.
It is hard work but Ajay's health has improved beyond all recognition and we have learnt so much that we know this is the most sensible way to live. We eat no processed food and have got rid of the microwave!
I am really thrilled to have found a group like this where I can talk about alternative approaches to health - as it is not a subject, which is always welcome. I really look forward to hearing from people and would love to chat and compare notes.
Subject: Can you tell us more?
Date: Tue Apr 27, 1999 7:47 pm
Ajay started by seeing a doctor (conventionally qualified but takes an alternative approach) who calls himself a nutritionist and environmentologist. He told her (and tells all his patients with MS) that she must give up caffeine, Sugar and alcohol. He also thought that she has a problem with dairy (a common MS allergy but doesn't apply to everybody). Having given up these things (and it has to be said that for a long time she did not stick to this religiously at all) her symptoms definitely got better. Moreover, it became clear that her symptoms are definitely linked to these foods - now, if she has a cup of coffee she has to go to bed. (And it is not psychosomatic as if she eats something that has Sugar in it by mistake she gets the symptoms before she realizes that she has had sugar).
He also advised a variety of supplements (I can give you further details if you are interested). I am sure these have made a difference to her.
Ajay had a food allergy test quite recently and has found it enormously helpful. We discovered that she is allergic to things I would never have imagined possible - like carrots! Since starting this new diet the difference has been amazing. She still had a few residual symptoms - head aches, pins and needles etc. She now doesn't really have any symptoms at all. OK - if she has a drink then it affects her more than it affects me - but generally she avoids having a drink and feels fine! The difference has been astonishing.
Other things we have discovered
Cranial Sacral Therapy
This is a form of osteopathy. I don't really understand it but the idea is that the osteopath (extremely gently - Ajay says she can hardly feel anything at all) manipulates the plates of your skull. Apparently, this releases tension and allows fluid to move around properly. Sorry - not a very good explanation. The first time Ajay had it she said that she felt the most amazing relief of pressure inside her head. She now has it every few weeks and feels much better immediately after each session. (Some people claim they control their symptoms entirely through having this)
While you are at the osteopath there is something else. Some people have a problem with their temporo-mandibular-joint (TMJ) (I am copying this out of a book!). This joint is the hinge joint in the jaw. What it means is that their teeth and bite are out of alignment. Some people have found that once this was corrected their is an improvement in their symptoms. Weirdly, Ajay's bite is not aligned and so her osteopath is working at getting it right.
Ajay's doctor tested her for heavy metal poisoning and found that she has very high levels of mercury, lead and cadmium. Her doctor has seen well over 4,000 people with MS and only 5 of them did not have mercury poisoning. Most of this comes from dental amalgum. There is a lot you can do to flush mercury out of your system and some people find having their fillings removed is helpful. If you do this you must see a dentist who knows what they are doing. There are all sorts of systems they must use in order to prevent any more mercury being spilt into your body.
The symptoms of mercury poisoning might sound familiar - for example, numbness, tingling, muscle cramps, muscle weakness, fatigue etc. This website has more info: http://www.intergate.bc.ca/personal/sweet/mystery.htm IS THE M.S. MYSTERY SOLVED ? - MULTIPLE SCLEROS…
Ajay also has massive lead and cadmium poisoning. These are not things that anyone is ever tested for by conventional doctors but must be a significant factor. Interestingly, since learning about this we have met a few people who have MS and who we suspect have lead poisoning because they used to work with lead soldering equipment.
There is a school of thought that most disease can be rectified if the body is given the right nutritional assistance. A proper nutritionalist is very different from a dietician. They will look at you and all your symptoms and try to work out what imbalances there are in your body and suggest a suitable diet and supplements to recitify the problems. If nothing else this is a way of being as healthy as possible which will help fight off further disease or infection.
Many of us have problems with candida (i.e. a yeast imbalance - this is astonishly common), gluten allergies, hormone imbalances and sugar imbalances. The nutritionalist will be able to assess what your problems are.
For this reason Ajay and I both saw a nutritionalist! (I have had eczema all my life). Obviously, what she told Ajay to do is specific to her but I can pass on the general MS stuff she told us. Much of this will not be new to you. She advocated a very low fat diet, keep saturated fats to a minimum, increase intake of fruit and vegetable, oily fish, vegetable protein sources (eg nuts, seeds, lentils etc) and non gluten grains (brown rice, millet etc) avoid red meat, dairy produce (i.e. milk, cream, cheese), gluten (in wheat, rye etc), alcohol, caffeine, salt, yeast, refined carbohydrate.
I really really recommend a book called Multiple Sclerosis (surprise surprise) by Judy Graham. She is a journalist (hence it is a very readable book), diagnosed umpteen years ago. She pursued all sorts of alternative ideas - and now works 12-hour days and is very well. The book is a superb summary of just about everything you can do to help yourself. I really recommend that everyone read it. If you need the ISBN number please let me know.
Reflexology - Ajay finds this helpful in the short term, very relaxing and nicely self-indulgent!
As far as finding a nutritionalist is concerned. For those in the UK there is a place in London called the Institute of Optimal Nutrition. They carry out research into the effects of nutrition on health and also train nutritionists. I would suggest that you contact them and they will be able to suggest someone in your area. There must be something similar in the US??
Sorry this is so long. Please let me know what you think and if I can send you anything more details.
Subject: about mercury Amalgam fillings
Date: Thu May 6, 1999 11:05 pm
Isn't it amazing that we are given this poison? I can't really believe that doctors and the government have embarked on such a massive cover-up over the years.
As for things which help flush mercury out of your system. You need to get some Chlorella from a health food shop. It is a green algae (it comes in pills!) which flushes out all metals which are contaminating our bodies. It is quite easy to get hold of. There is a good web site about it for which I have lost the address but I found it fairly easily so if you are interested you might be able to track it down.
Ajay also took a substance called DMSA - this was provided by her doctor, although I don't think it is a drug. Vitamin C is good at cleansing the body I think - if you don't already then I would definitely take 1-2 grams a day. Selenium and Zinc are also an absolute must!
Subject: How to get tested for mercury levels?
As far as being tested for mercury levels I don't really know how you would go about it without having a sympathetic doctor. You need to find someone
who specialises in environmentological medicine (or something like that!). I dont' think it is something you can do on your own. Sorry I can't be more
helpful with that.
I hope that is helpful. Let me know how you get on with the Pycnogenol. Ajay liked it a lot. She started with a phenomenally high strength version
which gave her a really good kick start when she really needed one. She now takes a more normal strength version and we are both sure it does her some
good. There are many stories of people who find it incredibly helpful. I am sure it will be good for you too!
Ajay has had all her fillings replaced and frankly, I am stunned that it is not possible in the states on a salary of $60,000 - let alone $1,400. Maybe some shopping around is called for. We found a dentist who could do this, who was very good and experienced and knew what she was doing and charged 500 pounds (no pound sign on this mac!) to do it. Alternative health isn't cheap - but then nor are drugs. Ajay and I rarely go out, don't smoke, rarely drink and don't spend money on anything much. Our priorities are to spend money on investing in health and our future. We probably spend more money on supplements than we do on anything else. We make it a priority.
Subject: What supplements are really important for MS-ers?
Here are some supplements that are really important for MSers
(the stuff I have written here comes from a lot of research and reading into the subject. There will be people who disagree but there will also be many nutritionists and doctors who agree)
Omega 3 & Omega 6. These must be taken in the right balance and there are some products which give you both in one really disgusting mouthful! I am investigating one of these at the moment and will keep you posted.
Vitamin C. When Ajay was at her sickest she used to take up to 10 grams a day of this. She now takes 1 gram which is what I take and what everyone should take. You can't overdose on vit C - Ajay's doctor gives people with cancer 50 - 60 grams a day.
Pycnogenol and other good antioxidants. Really important. Pycnogenol is meant to be particularly good for MS as it is oil based and is the one anti-oxidant which can get through the blood brain barrier and help where it is really needed.
Vit E - crucial for general health.
Vit B - Many MSers are found to be lacking in Vit B12. When taking a B12 supplement you should also take a Vit B complex supplement as it helps the
B12 be absorbed.
Chlorella - this is an algae (a pill so not as gross as it sounds!). It is excellent for flushing out metals such as lead and mercury which many people
with MS have high levels of.
Finally - a good mineral supplement is important. We take colloidal minerals - colloidal means that the minerals are suspended as particles in a solution
(you can't see them!). It comes as a liquid.
There are many others which are good for specific symptoms, but these are good for general MS health.
Subject: Could it be dangerous to remove mercury – amalgam fillings?
It is dangerous to remove mercury unless it is done using all sorts of barrier techniques to prevent it from being spilt. When Ajay had her fillings removed she had pads over her eyes - suction in her mouth to get the vapours out asap, suction by the side of her head, the drill had water in it to damp down fumes. This all sounds a bit gruesome but actually it was fairly painless. The important thing is to find a dentist who really knows what they are doing and who understands about MS and mercury.
It is possible to do it safely and this is preferable to leaving them in. Mercury continuously vaporizes so, if you have mercury fillings you are
constantly inhaling the stuff. It is incredibly toxic.
Subject: How do you treat headache?
My offering:- when Ajay gets a headache she finds that vitamin C powder in water gets rid of it. This generally applies when she has eaten something
that doesn't agree with her and gets symptoms because of it. For example, when we were away Ajay gave into temptation and had (a huge) piece of
chocolate cake - 2 hours later she had achey knees and a head ache. She had some vitamin C powder and 1/2 an hour later felt much better.
Subject: Have she been using Colloidal Silver ?
Date: Tue Jul 27, 1999 2:12 pm
Colloidal silver is one of the minerals contained in colloidal minerals. Colloidal simply means that the minerals are delivered in a form which is highly absorbable by the body. Different minerals do different things.
At the moment we are both taking a supplement which kills parasites. There is a link between having a dog and MS - Ajay has always had dogs and if you have dogs you are more likely to have parasites although I understand that most people do carry some parasites. You are meant to experience some 'mild discomfort' when the parasites die - as they release toxins as they die. We have both had mild cold symptoms which is a sign that we had parasites!
At least they won't be around for much longer!
Subject: What are (in your opinion) the most important steps that Ajay has done so far?
Date: Jul 1999
We were very lucky in that we found a doctor who takes an alternative approach to MS who is truly brilliant. I know that he is just about unique
but what he told Ajay to do, anyone can do, so I hope very much people benefit from hearing what he told her.
The first thing he made her do was give up caffeine, sugar and alcohol. He also told her to give up dairy products as she had a problem with catarrah
which is a classic symptom of a dairy allergy. By that stage we were also only using bottled water, to drink and to coook with (in order to avoid the
lead and other nasties that are in tap water).
The improvement was very slow but it was there and a year later she is generally just about symptom free. Just to show that it is all in the diet - we went away this weekend and Ajay completely, totally and utterly broke her diet.
Last night she announced 'I feel like I've got MS'. Her thumb went numb (always the first thing to go if she is over tired or breaks her diet) and she felt wiped out. I know that in a couple of days of lots of decent food and masses of water she will be back on track. You don't get rid of MS but you can get rid of the symptoms.
So, my advice to anyone would be to give up alcohol, sugar and caffeine.
Next, I think it is crucial to have a food allergy test. The difference in Ajay after this was amazing. I know there has already been some discussion about this on the list. I personally think having a blood test is the easiest if not the cheapest way to do it.
Ajay had tests to see if she had metal poisoning and it turned out that she has high levels of mercury and lead. She had her mercury fillings removed and is taking a substance called DMSA which binds on to heavy metals and drags them out of the body. This obviously needs to be done with the help of a decent doctor. Conventional doctors will tell you this is nonsense. Ajay was summoned to her doctor to explain what she was doing (her specialist had been writing to her doctor to keep her informed) - she told Ajay that what she was doing 'probably' wouldn't do her any harm but wouldn't do her any good and was a waste of money. Well, the proof is in the pudding. Conventional medicine offered her nothing.
The last thing I think is really crucial is to take decent supplements. Ajay takes a colloidal mineral supplement which is the most absorbable type of
mineral supplement you can take. She also takes Chlorella which helps flush out heavy metals and a really good combination anti-oxidant. Actually, I
have quite a lot to say about supplements so I will write more on this another time.
I hope some of you find this helpful. I am 100% confident that MS symptoms can be suppressed. I think it is important that you don't look for one magic
thing like a herb or anything really that will do it. I'm afraid you need to attack it from all angles and really not allow anything into your body which
can contaminate it. It is hard work but obviously worth the effort.
Subject: Have Ajay ever tried HyperBaric Oxygen Therapy (HBOT) ?
Date: Aug 1999
HBOT is widely used in the UK and the vast majority of people find it extremely useful. Statistics show that people who have HBO and do nothing
else have a slower rate of progression than those who don't. There is a piece of research on the 'net which I shall try and find.
Ajay was one of the few who didn't get on with it. It made her feel more tired and head achey. She is unusual though and I would have thought that
anyone who lives within easy reach of an HBO chamber should give it a go.
Subject: more about parasites?
Date: Tue Aug 31, 1999 10:57 am
Ajay and I have been taking a supplement which kills parasites. Most people carry parasites of some sort and they can cause neurological symptoms. I found a supplement made of only natural things (can't remember what at the moment but will look it up if you are interested) which kills them.
Interestingly, it says in the accompanying literature that in the first few days of the course (which lasts 50 days) you will experience 'mild feelings
of discomfort' while the parasites die and release their toxins. Woah - mild feelings?!
I felt absolutely rotten.
Actually, I felt like I had MS - I was totally shattered, achy and stiff muscles - I felt awful.
Ajay, too felt pretty lousy. Fortunately, it only lasted a day or so and does suggest that we both had parasites so it was quite encouraging really! It made a very
tedious course of pills seem worth while.
I am sure I will think of more on this subject but can't think of anything I should add at the moment.
Subject: more about sugar and allergies?
Date: Wed Oct 13, 1999 8:35 pm
When Ajay gave up sugar the difference was huge - subsequently, when she ate sugar inadvertently she knew all about it. Even once when we ate breakfast
out and it all looked fine and within her diet - 2 hours later she had achey knees and felt very tired. We realised that the baked beans had sugar in them (we buy organic baked beans which don't have sugar). It really brought it home to me that sugar is in everything. I'm afraid it isn't just a question of giving up sweets - but most processed food as well. Even pasta sauces and bread have sugar in them.
Did I mention that it tends to be the things we like the most that we are allergic to?
The body sets up some sort of chemical reaction that means we crave stuff we are allergic to. So, if you love sugar and cheese - they will probably have to go.
Sorry to be the bringer of such gloomy news. I have done it though.
I love love love cheese - and I gave it up (I have eczema) - I do feel better for it and the cravings do get easier with time. To be honest I suspect that everyone is allergic to sugar and probably cheese as well. We weren't designed to consume milk intended for another species.
Cows milk is far too high in protein for us. Sugar is just a horrendous thing! It causes free radicals (which make cancer cells) and is toxic and generally horrible! We would all live longer and healthier if we gave it up.
Wow - don't I sound miserable and mean! Just for the record I am actually quite a cheery person! Also - I feel a whole heap better for giving up sugar - on the rare occasions I eat it now I feel rotten which is an indication of how bad it is.
Date: Mon Oct 11, 1999 6:27 pm
Subject: Judy Graham & nutrition
Judy Graham's new book about alternative approaches to MS is due out in the Spring of next year (2000).
Ajay shares her alternative doctor with Judy Graham who gave her our telephone number in order that they could compare notes. She is very keen to
hear from anyone who has experience of alternative therapies, diets, supplements or anything else that would be useful for other people - i.e. do
you have any experience of alternative stuff that might be useful for her new book? Any information she uses will be fully credited to the person who gave
it to her. Her e-mail address is Judy@jusam.demon.co.uk .
I also thought that anyone who has any contributions to her book could also send their e-mail to this list - we might all learn something from it.
To anyone who hasn't yet read Judy Graham's first book - well, all I can say is that it comes highly recommended!
Subject: Loss of muscle mass?
Date: Thu Oct 14, 1999 8:18 pm
Before Ajay got sick she was very very sporty - hockey, rugby, weight training - you name it she did it and did it obsessively. When she got ill
she didn't do anything except sit in a heap. Her physio told her that she had some 'muscle wastage' in her leg. Ajay was devestated - for someone as
fit and sporty as her this was a really awful thing.
It occurred to me that all this actually means is that there is less muscle there than there should be. What a surprise! Anyone who has a muscle and
then doesn't use it will see that muscle decrease! It is not actually connected to lesions on your myelin sheathing - it is to do with the fact that those muscles have not been used.
Ajay started walking. She walked 3 miles a day - she said it hurt a lot. It felt like she was walking on pebbles, she had pins and needles in her legs and she did nothing else during the day. Now, I am not saying this to sing her praises but to say that it worked - the muscles built up and she no longer has muscle wastage.
Ajay's neurologist (who I loathe and despise!) says she is in remission. Yeah right - pretty funny sort of remission - if she had a cup of coffee, a large chocolate cake and a few drinks she would not be in a remission. She can control her MS and what it does. Don't let these labels get you down. I think they are particularly dangerous because they become self-perpetuating - i.e. you tell someone they are really ill - then they don't bother helping themselves and accept the 'inevitable' and then that happens.
Subject: toxic living (shampoo, soap, toothpaste)
Date: Sun Oct 24, 1999 12:47 pm
I went to an alternative health conference yesterday. There were lots of speakers and I will probably relay more of the stuff I learnt later but one
thing appalled me and I wanted to pass it on asap.
Having made such an effort with health Ajay and I make a big effort to avoid any toxins - this has meant that we now buy all our personal care products (shampoo, soap, toothpaste etc) from a company which specializes in toxic free toiletries.
But, did you know that commercial washing up liquid (is this called dish soap in the US?!) is designed to leave a residue on the plates so that they smell nice? When you put hot food on the plate it melts - and guess what (?) - we eat it.
Nice - we are being drip fed stuff that must be riddled with toxins, carcinogens and general rubbish - looks like I will be looking for a more friendly version!
She takes DMSA orally. She follows a two week program. During one week she takes DMSA, during the following week she replaces the minerals which have been drained from her body by the DMSA. So, during the second week she takes masses of colloidal minerals - she also takes extra selenium and zinc. As I understand it, heavy metals like mercury and lead occupy the bits of the body which are normally occupied by selenium and zinc - so, taking masses of selenium and zinc helps push the metals out of the body. Then, the following week she is back on the DMSA.
Ajay has been on the DMSA protocol for about 15 months now and I anticipate that she will be on it for another 6 months. She has had 3 tests for her
levels - one at the begining, one 6 months down the line and another a couple of months ago. It was only in the most recent test that her levels had come
I understand that you don't want to be on it any longer than necessary - but you need to get rid of heavy metal poisoning! I don't know exactly what DMSA is but I do know that Ajay's doctor is obsessively anti drugs and am confident that it isn't one. There have not been any side effects.
One other thing - when taking DMSA it is important to make sure you are not constipated and to drink a lot (like 6 pints) of water. This gets the heavy metals out asap - the last thing you want is to have them sitting around in your bowel for hours on end (gross I know but these things have to be said!)
In the week when she doesn't take DMSA she takes high levels of colloidal mineral supplements - she also takes potassium (forgot to mention that before). Potassium helps the kidneys get rid of any heavy metals that have become stuck there.
Date: Wed Dec 8, 1999 5:21 pm
Subject: supplement which seems to be very beneficial for energy
We (that's Ajay and me) have just found a supplement which seems to be very beneficial for energy. It's made by the same people who make the colloidal mineral supplement we both take - Neways. They produce a big range of health supplements amongst other things. The one that's good for energy is Ming Gold - it is made out of some sort of Tibetan mushroom like plant. It suddenly occurred to me that I know quite a few MSers who use it and find it really helpful. If you are interested, let me know and I shall give you Neways details. (They are in the US as well as UK).
Date: Sat Jun 3, 2000 12:20 am
Subject: Could you elaborate on your comment the Ajay has gotten progressively better as she chelates?
Since starting to chelate she has progressively improved and is now pretty much symptom free. It would be fair to say that there isn't much that she
doesn't do. She has to make a bit more of an effort than most, and has to plan her day sensibly but she is pretty much 100% symptom free.
She is also extremely fit (much much fitter than me although that isn't difficult) - she plays hockey, badminton and goes to the gym.
Interestingly, there have been periods where she has felt unwell - predominantly fatigue - and these times have generally been explained by a rise in her heavy metal poisoning. As I explained yesterday these levels go up and down throughout the chelating process.
Having said all this there is another thing - chelating is not the only thing she has done. She has made huge changes to her diet and lifestyle, takes supplements, avoids stress and generally leads a more chilled out life! Chelating has undoubtedly helped a huge amount - how could anyone be well
when suffering from such high levels of heavy metal poisoning?- but it is just one piece of the jigsaw.
Date: Wed Jun 20, 2001 5:52 pm
Subject: Juice Plus & chronic eczema since I was 6 weeks old!
My weakness is my skin (as opposed to someone with MS having their weakspot in their brain!). I have had chronic eczema since I was 6 weeks old. I started the juice plus and developed the most amazing boils all over my arms (yes, truly delightful it was). They got bigger, as did my arms, and more painful until I looked utterly gross and felt totally miserable.
In all honesty, I don't think it was a healing crisis - I think I was massively allergic to it.
Ajay, my girlfriend who has MS, has endless food allergies /intolerances and is absolutely certain she would react badly to JP. She develops an ntolerance to something if she eats more than two days running or more than a couple of times in a week. For example, when she first got ill I got into juicing in a big way and juiced a lot of carrots (amongst other things) mainly because they taste nice and are dead easy to juice. She then developed a massive allergy to them and only eats them rarely now having not eaten them for several years.
I think the theory of JP is great (and it obviously suits a lot of people) but personally believe it is better to take something that is close to the basics
as possible - i.e something that has just minerals in it and nothing else at all, no filler, no capsule, no raspberry juice - no nothing except the minerals.
Rani: I have a list of about 20 things to try out. Please, God, may one or more of them click and be the right one for me.
Date: It's more likely that a combination of many things will be right for you. It's unlikely that there will be one or two things that will make the difference - you need to attack the whole lot! That is certainly what Ajay has found.
Date: Wed Aug 29, 2001 11:18 pm
Subject: MS causes
In a message dated 29/8/01 9:09:20 pm, email@example.com writes:
<< could aspertame be a cause of ms? What other environmental factors could be suspect? Exposure to computer monitors, high voltage lines, exhaust fumes while commuting? Lousy municipal water? Mercury fillings, all of the above? >>
Olivia : You bet - my view is that environmental factors play a huge part in MS. Water is often high in lead (v bad for the brain) and other chemicals ( eg fluoride). There is research that shows people who live near electric pylons are more likely to suffer from ME so maybe it could trigger MS.
Geopathic stress causes all sorts of problems and is generated by underground water, electricity sources ( videos, clock radios, TVs - all generate geopathic stress even when not used - i.e. on 'standby' ). Exhaust fumes trigger all sorts of problems - when first diagnosed Ajay found exhaust fumes a big problem.
MS is often viewed as a 'dirty disease' - no insult intended! It is a result of 'dirty' modern day living and all the toxins, chemicals etc that we are exposed to. In addition to this we do not have the nutritional support from our diets to help our bodies deal with this and to help ourselves heal. Something has to give - some people get cancer others get MS - all sorts of factors decide what the weakness is.
It is important to remember that there is unlikely to be one 'cause' of MS - in my opinion, it is a question of cleaning up everything - from drinking filtered water and sorting out food allergies to checking for geopathic stress and trying to avoid adding to the chemicals already in your body.
Ajay used to take colloidal silver whenever she felt the need and it seemed to be helpful. I know quite a lot of people who take colloidal silver and swear by it. It's possible to buy/make a gadget to make your own colloidal silver which keeps the cost down (I think there are websites dedicated to this but it would be worth talking to someone who has done it first).
I used to be in contact with a woman who lived in Scotland who had a Collidal Silver maker - I think she was called Margaret. I'm not sure if she was subscribed to mscured but if she is then hopefully she'll get in touch!
Date: Tue Oct 30, 2001 10:47 am
Subject: DMSA Chelation?
Ajay had massive levels of lead and mercury and slightly lower ones of cadmium.
She started off using DMSA to chelate. The idea is one week of DMSA and one week of high doses of mineral supplements to replace the minerals that have been drawn out of the body by the DMSA as well as extra potassium which flushes the kidneys out. She did this for about two years and bizarrely her levels just got higher and higher.
Apparently, the reason for this is that as you do the chelation it draws the heavy metals out of the bones etc and so that the heavy metals charge round the body which means that although overall your levels are decreasing there is more 'available' in the body when it comes to testing. (hope that makes sense)
So, she stopped the DMSA and now uses selenium and zinc. She takes selenium on an empty stomach before meals (this draws the heavy metals out) and zinc after
eating (which mops up the heavy metals).
She hasn't had a test for some time so I don't know if her levels are coming down but selenium and zinc don't make her feel ill which the DMSA did because
it aggravated the lead etc.
We know one woman who had IV chelation because she had such massively high levels of lead and needed to get rid of it fast. However, it made her feel
extremely unwell and doesn't come recommended.
There is a lot of research about TMJ problems - disproportionate numbers of people with MS have them and many people find that once they have their TMJ sorted out their MS symptoms subside or even go altogether. Ajay saw an osteopath (who does cranial sacral therapy as well which Ajay loved) who manipulated her TMJ to get it back in alignment and Ajay felt immediately better. It's well worth having a go with this.
There is a book about TMJ problems which talks about the link with MS - I'll have to try and find it (and give you the details) although that may not be easy! Ajay started reading it sometime ago but stopped as reading about the symptoms of TMJ problems made her feel ill!
Date: Wed Dec 19, 2001 11:30 am
Subject: long term view
In a message dated 18/12/01 11:00:32 pm, firstname.lastname@example.org writes:
<< Once healed, the myelin should begin to regenerate, no ? Or are you of the position that you have to maintain a careful diet permanently to keep MS symptoms at bay ? >>
My view on this is that you will always have to maintain a careful diet in order to stay symptom free. Ajay is pretty much symptom free (apart from having slightly less energy than most). However, if she eats the wrong stuff or doesn't sleep or does any of the other things that exacerbate her symptoms she says she has MS again. I have heard lots of stories about people who have managed to get their MS completely under control who then let the diet slip and end up back to square one.
Date: Mon Dec 24, 2001 11:15 am
Subject: parasites supplements
Ajay did a course of a supplement designed to get rid of parasites and definitely felt better for it. We know quite a few people who have done it and they are all pleased they have. It is interesting - as the parasites die they release toxins and so about 5 days into it you know whether or not you have parasites. Most people suffer a bit of fatigue (Ajay got the most enormous spot in the middle of her cheek that she was pretty unimpressed by!) or get the symptoms of a cold or something equivalent.
Ajay used a supplement called Purge made by Neways. (www.neways.com)( or .co.uk )depending on where you are! Purge contains a variety of different ingredients
(don't know them off hand but can check if you are interested) and is designed to deal with a range of different parasites.
You should take Purge with a fibre supplement (Neways make one) which flushes everything out of your system asap. You don't want the parasites and their toxins hanging around for longer than necessary!
The idea is that you do a program, 25 days taking Purge and the fibre supplement, 5 days off and then another 25 days on. This kills the parasites and gives time for the new ones to hatch (not sure if hatch is the right word but you know what I mean) and be killed off so it should completely rid the body of parasites. You can then carry on taking a maintenance dose if you want or repeat the whole thing if/when you feel the need.
Don't be put off by Neways being a MLM company - their products are genuinely excellent. In order to save money on the products you can register as a distributor for free (in the US - it costs £10 in the UK), there is no minimum order or obligation. It just gives you a chance to try to Purge and anything else they do without paying the full price.
Alternatively, if you are in the UK I can easily order them for you and send them to you.
I have a suggestion about this. As I understand it (and this is very much in layman's terms) mercury lodges in the deepest most crevices of the body eg bones, fat etc. It is then not 'readily available' and does not show up in tests because it is not slushing round the body and therefore is not available to show up when you have a test.
Ajay's mercury (and lead) levels have gone up and up with every test she has had since she started getting rid of the stuff 3 1/2 years ago. It doesn't mean that she has more in her system but just that it is being dragged out of where it was and is more readily available to show up in urine.
Ajay had massive food allergies when she was first diagnosed. One of things that she reacted violently to was sugar (which is bad news anyway).
One day we went to a cafe for breakfast and she had all the things she would have had at home - poached egg, toast, baked beans etc. We left the cafe and crossed the road and she immediately found it difficult to walk and had really big problems with painful knees. We racked our brains and worked out that at home we try to be as organic as possible and our baked beans don't have sugar in them. Conventional baked beans do. It was just the sugar in the baked beans (and you wouldn't have thought there would be very much) that made her feel terrible.
That's interesting - Ajay had hers measured in the same way and that did dictate the order in which they were removed. However, she also had the barriers, suction, pads over her eyes etc. As I understood it at the time the reading from the test simply tells you if your fillings are leaking mercury and how much. It is possible for a filling in a good state of repair to not leak mercury at all and, in theory, not be damaging to your health. However, over time, most decay enough to start leaking. You will also have been exposed to mercury at the time you were given the fillings. I know a couple of people whose first big MS exacerbation was shortly after having a large filling or two.
<< but The MS Society no more wants to find a cure for MS than the AMA or the ADA do. >>
Dr Kingsley, who Ajay sees, is utterly convinced of this. He has spoken to people who head the MS society in the UK and is certain that they have no interest in finding a cure for MS and, as you say, it's not in their interest to find a cure.
Subject: Does anyone here take MSM to help heal from their MS?
Ajay uses MSM it and finds it very helpful - if say, she has an MS type head ache she takes it (in a combination pill with cat's claw) and, generally, within 20 minutes or so she is feeling better. I would recommend it. Its anti-inflammatory properties strike me as being ideal for MS.
Date: Mon Feb 25, 2002 11:29 am
Subject: Vitamin B12
Ajay has B12 injections - which she has been unable, so far, to get her neuro to prescribe and, therefore, has to pay for them.
She is just about to make an appointment to see her neuro to ask to have them prescribed on the NHS. We know that this is possible as we know some people who have B12 prescribed by their neuro. Does anyone know of any more research that we could usefully take to the neuro as evidence that B12 is useful? Last time Ajay was told by her GP that she had to prove it would be useful before she would prescribe it and so we gave up. This time I would like to be armed in advance!
Joyce : << Hi, Olivia, I have been giving myself B12 injections for years. It was my neurologist who wanted me to have them! I don't eat meat, and B12 is the only vitamin that can't be obtained on a plant-based diet. I hope this helps. >>
It does help - thanks. Ajay doesn't eat meat and if that is an added incentive for her neuro to prescribe the B12 then that is useful ammunition! Thanks.
Do you give them to yourself into the muscle or under the skin? Also, I'd be really interested to know how much you give yourself and how often - if you don't mind!
<< My PCP insisted on doing a blood test and it showed I had ample B-12 in my blood. >>
Ajay went through this bit too (I had forgotten since I read this from you!). Initially, we asked her neuro to prescribe this for her and he said that he doubted she had a deficiency - she had a blood test which, of course, showed her B12 levels are fine. Apparantly the only really accurate test is from spinal fluid in a lumbar puncture which she is not prepared to have (because there are so many problems with them). There is no doubt that she is better just after she has had a B12 shot than before - for the record she has 3 ml intra muscular once a fortnight. Her doctor wanted her to have 5 ml but it is a huge amount and very painful so she only has 3ml.
Someone asked how she gets it if it is not on prescription. This has probably arisen from an unclear e-mail written by me! In the UK if you can get a prescription on the NHS then it is free but if you get a private prescription (which is how Ajay gets her B12) then you have to pay for it. Currently Dr Kingsley (who Ajay sees privately) prescribes her B12 and a friend of ours who is a nurse injects her which is really useful.
Date: Sun Mar 24, 2002 8:26 pm
Subject: dietary changes
You will find that dietary changes have been made by many people on this list and there are many people with MS who are convinced that changes to their diet have significantly helped their symptoms.
My girlfriend, Ajay, was diagnosed nearly 4 years ago. When she was diagnosed she was getting worse rapidly. She was in a lot of pain which made walking difficult. She had vision problems and struggled with speech. She had cognitive difficulties which made interacting with other people virtually impossible. A few weeks after she was diagnosed we heard about a doctor who specialises in taking an alternative approach to MS.
He got her to give up dairy, sugar, alcohol and caffeine. He also gave her infusions of minerals and vitamins. Two months later she played hockey. It hurt and it exhausted her for days but she did it and she had thought she would never be able to play hockey again.
Over the last 3 1/2 years or so she has embarked on a program of (I can't think of a better or more technical way of putting it) cleaning up her body. She had her amalgam fillings removed (she has high levels of lead and mercury poisoning) and started a program designed to flush the heavy metals out of her body. She had a food allergy test and discovered that things as innocuous as carrots, pineapple and melon exacerbate her symptoms.
She avoids unnatural substances and chemicals as much as possible which includes using toxin free soap, shampoo, toothpaste etc. She trys to eat organic food as far as possible. She avoids processed foods etc.
She also takes a large number of supplements which definitely help on a daily basis and I'm sure are useful long term as well.
She now works full time, plays sport (scored a goal yesterday in hockey), walks the dogs and is very fit. However, if she has a cup of coffee, eats the wrong stuff or doesn't sleep properly she isn't well. She still has MS but has learnt to avoid the triggers for her symptoms.
There is no doubt that she is lucky in that she responded quickly to this approach and that she does seem to have found most of the triggers for her symptoms. However, she is not unusual and there is no doubt that many people do really well from this kind of approach. Although she was lucky in that she found a doctor to guide her through what to do - most of this can be done yourself.
The first thing to do (in my opinion) is to completely cut out caffeine, sugar and alcohol. Then get rid of processed foods and cut down on fat intake. I really reccomend the websites at the bottom of this e-mail as they will give you a lot of help and guidance on what to do.
There are lots of people in this group with a mass of knowledge so stick around! I'm sure you'll find it helpful.
Date: Sun Mar 24, 2002 8:26 pm
Subject: Ozone and Oxygen
Hyperbaric oxygen is fairly widely available in the UK (not through the NHS needless to say!). Most people have a really good response to it and there is research which suggests that the progression of MS is significantly slowed down when people use HBO over a number of years.
Ajay tried it just after she was diagnosed. It didn't suit her - things that suit other people tend not to suit her! However, I met a lot of people during that time who absolutely swore by it. There were some who would be wheeled into the HBO chamber and would walk out after their dive and others who said that it greatly helped with fatigue.
I would have thought it is definitely worth trying if there is a chamber near you. Do check out their safety arrangements - pure oxygen should be treated with extreme care and you need to be careful that the people who run the chamber take appropriate precautions.
If you do try please let us know how you get on.
Date: Mon Mar 25, 2002 5:45 pm
Subject: test for mercury
Well, generally to get yourself tested for mercury you need a doctor to refer you. However, there has been a lot of discussion about this recently. Maybe someone in the US who has been tested can let us know how it was done?
Failing that - it may be possible to have a telephone consultation with Ajay's doctor here and get him to arrange for you to be tested. Next time we see him I'll ask him if he knows of labs in the US that test for mercury.
Oooh - I've just thought - I have a friend who is a neurologist in Seattle - I'll ask him. His wife has just had a baby so we may not get an instant response but I'll keep you posted.
In a message dated 26/03/2002 06:42:22 Pacific Standard Time, email@example.com writes:
Thanks Olivia, that's encouraging information. do you mind me asking why it didn't suit Ajay?
I haven't a clue! There are a few things that suit other people that haven't suited her - we have just decided that she's 'sensitive'!! But there may be more to it than that!
Dr Kingsley does a thing when he draws blood out of the body into a large syringe and passes it over an infared light and then reinjects it (I think that's how it works - but Mark, do you remember more details of this?). I think the idea is that it oxygenates the blood - most people really like it but it didn't suit Ajay. Hopefully Mark knows more details about this but otherwise I'll ask Dr K next time we see him.
Something Ajay uses which is vaguely relevant is oxygenated water and an 'oxygen spray' both of which she likes and finds boost her energy levels and help with immediate symptoms like weird pains in her head which she gets a lot.
> Oops, I just read that the Pau d'Arco (Lapacho) Tea boosts immunity - but isn't that bad for MS patients?
I have a theory about this - well, actually, it's Dr Kingsley's theory and it makes sense to me. He doesnt' believe that there is anything wrong with the immune system - he thinks that MS is a collection of allergies and imbalances. Many people have allergies and they come out in different ways - for example, I have eczema and if I eat something I'm allergic to my eczema flares. Ajay's problem is her lesions and if she eats something that she is allergic to they flare up.
Also - people with MS say that they don't get colds or flu but as they gain control of their symptoms and they believe their immune system is functioning normally they do get these types of bugs. I have noticed that when I get a cold - Ajay gets a flare up with her symptoms. I think that what is happening is that she is getting the same bug but that it is showing itself through her MS symptoms rather than normally because her system is so out of balance. (this too is Dr Kingsley's theory).
Hope this makes sense.
Date: Thu Apr 11, 2002 8:43 am
Subject: Pau d'Arco (Lapacho) Tea and Echinicea.
I don't think the immune system is involved. I believe it is purely a question of allergies etc - for example, Ajay takes echinacea which, according to the immune system theory should make her ill, but it doesn't - it helps her.
Maybe this wouldn't work for everybody - maybe MS is a different disease in different people - but this approach seems to work for the vast majority of Dr Kingsley's patients so I don't think so.
Ajay used a zapper as just a small part of everything else that she did/has done. She was doing a lot of other things at the time and showed significant improvement. Who knows if it was down to the zapper - but it certainly didn't do her any harm.
This is a copy of the email I sent to the 'mscured' newsgroup today, detailing my progress with the cannabis trials...
For the last six weeks I have been taking part in a double-blind trial in Northampton, Engand to evaluate cannabis for the relief of some MS symptoms. I am due to return to the hospital tomorrow at the conclusion of this initial stage - everyone on the trial then gets a 4 week extension where they are definitely 'on' the real stuff.
The trial organisers (GW Pharma) told me at the beginning that there was a strong placebo effect, but I have never had a remission in 12 years from my CP MS, so I knew that any changes I experienced were likely to be because of the cannabis. And there have been changes...
Cannabis - method of administering
Breath-freshener sized under-the-tongue aerosol sprays containing a distilled and low dose cocktail of 2 active cannabinoids. (By comparison, cannabis resin from your local dealer has around 50 ingredients). Three sprays per day building up to a maximum of 48. I have around 24 spray containers in the fridge. No more than 7 squirts of spray at a time, so that's at 8.30 a.m., 12.30, 2.30, 4.30, 6.30, 8.30 and a final 6 at 10.30 p.m. Very time consuming as you have to leave 3 mins between each spray. But my family (wife and two teenagers) have been just magificent.
Cannabis - benefits to me
My CP MS has left me in a chair and I can no longer stand unaided. My right leg is permanently in flexion spasm and my left extensor. In other words one leg stays bent and one wants to stay straight. I have physio and hyperbaric oxygen twice a week and spend over an hour each evening using a standing frame.
The cannabis has produced the following effects:
1 Sleep - now deeper and longer and I awake feeling rested and refreshed instead of being permanently tired. I have stopped falling asleep during the day as well.
2 Bladder - now 1 or 2 times a night instead of 4 or 5. And daytime 'urgency' is reduced. Bladder capacity before was about 200ml - now it is 300ml.
3 Leg movement - I was sitting in my chair with my legs locked together before. Now there is 18 inches of daylight between my knees.
4 Flexion spasm - my right leg is much easier to straighten (I use a leg brace at night, but before cannabis it was too painful to keep on all night. Now, no problem).
5 Tremor - much reduced.
After the 4 week trial extension there is a possibility of cannabis being prescribed on a 'named patient' basis.
That's excellent and very exciting news. I am really pleased the trial has been such a success for you.
Have you had any side effects? I know that some people find that smoking cannabis is unhelpful because it upsets their breathing and also Ajay has found that it relaxed her to a point of being uncontrolled in a rather frightening way. If you haven't found these types of problemsd then this is really exciting news.
You say that there is a possibility of now having cannabis prescribed to you - how likely is this? It would be a bit of a blow if you did not get it prescribed when you have found the trial so helpful.
Do you have any idea how other people on the trial have got on?
From: "Mike Goy" < firstname.lastname@example.org>
Date: Fri May 3, 2002 11:18 am
No, everyone on the trial has not reported the same effects. There seems to be a problem with 'intoxication' although not in my case. Some people are getting light-headed etc after only a few sprays. I can safely manage 48 sprays a day (the maximum) with no ill-effects. It is low dose stuff and only the active cannabinoids are included in the spray. Typically, every group of 20 people breaks down as follows: 3 = fantastic improvements (mobility especially), 14 = moderate to good improvements (especially sleep and bladder), 3 = little or no change.
This is not like smoking cannabis - then you have no control over dosing levels. And of course it will be prescribed at the end of the trial - I was just being polite and cautious.
I'm very excited.
Thanks for the info and that is brilliant Mike - I'm not surprised you are excited. Please keep us posted.
Date: Fri May 3, 2002 11:18 am
Ajay is much better with sugar than she used to be - she used to react within 20 minutes, with her it was weak knees that were the first sign she had had sugar, quickly followed by pains in her head.
Although she doesn't react like she used to I do worry that small amounts of sugar over a prolonged period of time could be doing unseen damage. If anyone has any views on this I would be interested. I know that lesions can get worse during periods where symptoms do not worsen - does anyone have any thoughts on why this is?
Last week I wrote an e-mail with the various things Ajay had done to help her health - I knew I would forget a lot of what she had done and I have now remembered a couple of other things.
She embarked on a homeopathic course designed to desensitise her to her food allergies. It works for most people but unfortunately she was so massively allergic to these foods that the homepathic treatment made her worse. However, it would definitely be worth other people trying this approach as having a very restricted diet can be hard work.
She also had homepathic treatments to get rid of the chicken pox/shingles virus. This virus is often involved in MS. I had shingles shortly before Ajay's first major MS exacerbation. She had had minor symptoms before but it seems that being exposed to the shingles virus was a trigger for a big flare up. She (and I) both went on a course of homepathic potions (I'm afraid I can't remember what they were but can find out) to get rid of this virus. I reacted to it massively and managed to get herpes (same virus really) in my eye which was a delightful experience. Ajay didn't react and I suspect it helped.
I'm sure all this things, which at the time dont' seem to make that much difference, contribute to good health over time.
Parafree is made by a company called Neways. They are an MLM company but please don't let that put you off - their products are superb. Whereabouts are you and I'll give you appropriate contact details? Neways make a wide range of supplements and toxin free personal care products which are all well researched and really good news. I would recommend them to anyone. We discovered them because Ajay's MS specialist, Dr Kingsley, gives some of their products to his patients.
No, gluten didn't come up on her food allergies list. I'm not convinced though - she reacts badly to pasta and I suspect she does have a problem with gluten. She eats a bit of bread but tries not to overdo it. I suppose that intolerances do change and if she eats a lot of something she definitely develops an intolerance to it. I suspect that's why she has a problem with pasta as wheat is in so much. We make an effort to avoid it as much as possible.
We have definitely found that she reaches a plateau in her improvement every so often and stays at that point for sometime. We have recently noticed that doing things that she shouldn't doesn't have the same detrimental effect on her that it used to - which is a tricky one because she needs extra encouragement/bullying to behave! Stress doesn't seem to be as much of a problem as it was six months ago. She has been very stressed recently and her health doesnt' seem to have suffered (much to my surprise) which has been a good thing of course.
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