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My treatment at Breakspear hospital and other things you can do to help ME/CFS and IBD
WAMCARE
redtoffee wrote in wamcare
Breakspear Hospital

The truth is, I do recommend Breakspear. I will tell you the truth and see if you want to go down that path. You can read my journal entries here to find out what I have been having done at Breakspear. Although I do need to update for this year. http://www.caringbridge.org/visit/lauradunks/journal

I think Breakspear is the best option for people in the UK. It doesn’t perform miracles. It doesn’t have all the answers. And it costs a lot of money. But it is the best option for people in Britain. Especially with Dr Myhill in trouble for no good reason. In fact people come from all over the world – even Australia and the USA to go to Breakspear. I have been there 2 years and spoken to many people who have all improved. I only know one person who it seemed they couldn’t help. I will explain this later. I myself went from 10/15 % to 70% now. I started treatment in August 2009.

Now, how long it takes to get better and the cost you have to pay will depend on what they find wrong with you. Some things take less time to treat. Everyone who has ME has a different cause. Some people have viruses/bacteria/fungi/parasites, others have heavy metals or toxic chemicals inside them like organophosphate fertilisers, or malnutrition (e.g. difficult with the body absorbing nutrients from food.) Also most people have problems with their mitochondria making energy. This can be due to a variety of reasons.

You need approximately £1500 to see an environmental consultant and have all the blood, urine, and stool tests to find out what is wrong with you. They need to do this so they can treat you. If people have less, they can pick the most essential ones. If you have bad neurological problems you will need about £1000-£1250 to see the neurologist and have all the tests. I had everything suggested to me, which was enlightening and enabled them to treat me.

I have had pretty much everything recommended to me in terms of treatment and between me and my grandparents, we have paid approximately £22000 in nearly 2 years. Now it will depend on what they find wrong with you to how much it will cost. For example, if you have lyme disease and choose to come in and have iv antibiotic drips to treat it for 2 months you will pay more than £30000. If you choose to have the oral route, you will pay a fraction of this, but it will take longer to get better. They are used to people coming and paying for it with their benefits like I have this past 8 months, so they are used to this. They will tailor a programme to what you can afford, so less money will not stop you getting better, but it will take longer.

I do recommend that people have a minimum of £1500 saved before they see the consultant. Then while they are waiting for the results they can continue to save. If they really cant get any money there are options you can try first. About 5-10% of patients get funding from the NHS. So ask your Breakspear doctor to write a letter to your GP and ask them to apply for funding. They will use your results to show why you need it. I have had two GPs try this and they failed both times, but for a few it does work. A bit of a postcode lottery depending on whether the NHS in your area will pay for you though. The second option is applying for help with Breakspear’s charity. http://www.breakspearmedical.com/trust/

Now the treatments Breakspear use, include the following:

Diet, supplements, iv’s with vitamins, pills that make you absorb your food better, antifungals/antibiotics/antivirals, low dose naltrexone, immunotherapy vaccines for allergies and sensitivities, chelation if people have heavy metals either by ivs and drugs or by nutrients if there is less heavy metals inside you (and the cheaper option,) carbon dioxide, a special mask, and buteyko breathing for those deficient in c02, oxygen for those deficient in 02, infrared saunas to detox, and many more things. They will also make you reduce the toxic chemicals you put in your body, by going for organic makeup and not using plastic bottles for water or non-stick pans.

Breakspear will always take the nutritional type route over the drug route if possible. You can deep heal through nutirition. Fix the problem permanently. Drugs have side effects and mask symptoms. They also often have things in them, which are bad for you. All the supplements they use are sourced from the best companies. They are also much cheaper to buy through them than through the internet. However, you need to be a patient to order anything from Breakspear pharmacy.

Also many people get worse with treatments before they get better. For example, de-toxing, to get rid of chemicals involves releasing chemicals into the blood stream and can exacerbate symptoms while it is working. The same with anti-candida diets to get rid of candida in your gut and chelation to get rid of heavy metals. Therefore they tend to wait until you are well enough to do these things. The sicker you are, the gentler they will start off with. Thus obviously, the sicker you are, the longer it will take to get better.

So if you start new supplements, you want to start one every couple of days and keep a note of any worsening or improvement. However, some things will take ages before they work. So it can be an idea to keep track of what you started when and what happens with your symptoms.

Now a word of warning: I know one girl who has been at 0% for 5 years. She went to Breakspear (they carried her in on a stretcher) and she had all the tests. She had Lyme disease as well as ME. Anyway they started to treat her very slowly by IVs, but the combination of being there and being that sick along with the treatments just made her worse. It seems your body can get to a point where you can do nothing to help it because your body is so sensitive that anything you put in it including your own food and water is a problem because you are so sensitive. I had this problem to a mild degree. I hate to think what could have happened if I had waited another couple of years before going. Now on the other hand, I know people who have gone to Breakspear with a variety of illness and were literally on death’s door and they are much better. But it takes months to really start to improve and may take you years to get better. But you have to stick with it and be strict with the diet (which is boring) and pacing yourself as well.

Now one of Breakspear’s most popular, but also most expensive and controversial, treatments is their immunotherapy vaccines. For the most sick or those with allergies and ME, they recommend allergy vaccines. Now, if you can afford these, they are worth it. However, they are very expensive. It costs £210 for day of allergy testing where you will get up to seven items tested.

When I first went, I could only do half days and it took me longer to test each item. So it took me thousands of pounds to build up my 75 items. The items they test are the foods you eat and anything you are allergic to. So I have the foods I am allergic to, the environmental things like pollen and dust, and the foods I can eat on my strict diet, in a vaccine, which I take daily. I have to have the vaccine retested every 3 months until it stabilised (at £210 a day.) It usually takes 1-3 days to have it retested. You also have to pay for the vaccine itself. I can’t remember how much that is, but it is roughly £3-4 an item each time. I can spend £1000 on a trip to have them retested. Except last time in Feb – my vaccines are now stable so I had all three retested in one day and don’t have to go for another six months. This is good. It took over a year to get there. But it was worth it for me.

For people with severe allergies or multiple chemical sensitivities, who can’t eat and are dying, this saves their lives. However if you have ME you may think it is not the best use of your limited funds and you may be right. But, if you are severely ill or have severe allergies as a part of ME, this can give your body the boost it needs so that you can start more aggressive treatments. Though, it does cost money and time to get there. Also if you are very sensitive allergy testing is exhausting. I am glad I did it. At the time I was a little cynical. It also took almost a year before I got any real improvement in terms of energy. However, my allergies like hay fever improved with a month or two.

I take the vaccine daily and also give myself another shot if I get in contact with any dust or pollen and sneeze, or if I have an allergic reaction to something I have eaten.

The theory behind the vaccines is that you have each item tested on its own. You start with the highest concentration injected into your arm. You will get symptoms. Even if it is just an itchy wheal. Some people get wheezing or anxiety or racing pulse, or become really weak. I have seen one person pass out. Now when the concentration gets to the point where your body is happy. The symptoms will stop. Then this is the level of the item you will have in your vaccine.

Over time you will desensitise and the levels will go down making you less sensitive. When this happens you need to be retested as injecting yourself with a vaccine at a wrong level to the item you are in contact with can make you worse. Eventually they stabilise and do not change – mine have done that now. They also test you for histamine, which is what your body produces when you have an allergic reaction. (You would usually take antihistamines.) With this process you take antihistamine at your level. It works much better than antihistamine and has no side effects in the long term. If you get recommended vaccines and you can afford them, then go for them. If you can’t then don’t worry, it just may take longer to improve, but it doesn’t mean it is not possible.


Now for those who have to travel far, Breakspear does have a guesthouse you can stay at, (with free transport to and from the clinic.) It is only a day hospital. So you have to go home/stay somewhere at night. http://www.breakspearmedical.com/files/overnight.html


What you can do in the meantime while you are saving for Breakspear

For those who cant afford Breakspear, or are saving, but can’t go yet, there are some things you can do in the mean time. I have read the following articles on a well known ME site. Their articles on deep healing explain what people do at Breakspear and in other places. I will post the links here and advise you on what I would do. Please don’t take this as medical advise. I am not a doctor. If you are making changes you should discuss these with your GP first.

This link is about deep healing in ME. http://www.hfme.org/treatmentconcepts.htm#698360769
And this link says about the order of attack with deep healing. http://www.hfme.org/theorderofattack.htm

The links expand on what I am saying. However, for those with limited concentration, here is the summarised version (some is copied and pasted.)

1.)
In the first point on the order of attack it says about getting plenty of rest and keeping a notebook about what you try and your symptoms. http://www.hfme.org/quickstartguide.htm

Strictly avoid overexertion by following the 80% rule. Work out how much you can do every day without becoming sicker, and then do only 80% of that. To have each day the same activity-wise is the goal. Avoid adrenaline crashes where you can operate outside your normal ability levels for a hour or a day but then spend a long time after much sicker; days or even weeks or months or longer. This is obviously involving physical and cognitive energy and stimulation. Get enough rest and/or sleep to help your body heal itself. You can try meditation and relaxation.

2.)
Part 2 is about getting your gut to work properly. Especially relevant if you have malabsorption, difficulty gaining weight, or another illness like Crohn’s Disease – a form of inflammatory bowel disease (which I have.)

ð a. Improve your diet and the health of your gut. No disease can be healed while the gut is functioning poorly. The gut houses half of the immune system and the detoxification systems and poor gut health means not absorbing the nutrients necessary for healing from food or supplements. Each change to the diet should be made over 1-2 weeks to avoid or at least minimise problems.

Try and drink at least 2l of filtered water a day and eat enough calories and healthy foods to provide your body with what it needs to get better.

http://www.hfme.org/treatingmefood.htm This is a link on the diet HFME recommends. It is similar to the Specific Carbohydrate Diet, which I am on because I have a leaky gut and malapsorption due to ME and Crohns Disease. However, there are many people who do the SCD diet with ME alone and have good results. You basically only eat things your intestines can absorb.
http://www.scdiet.org/
http://www.breakingtheviciouscycle.info/ This site has the legal/illegal list.
I use this cooking book: http://www.amazon.co.uk/Healthy-Living-Cookbook-Carbohydrate-Lactose-free/dp/159233282X/ref=sr_1_2?ie=UTF8&qid=1303775946&sr=8-2

There are some yahoo groups/mailing lists about the SCD diet too in ME.


ð b. Reduce your toxic load. Change the types of personal care and cleaning products you use, don't smoke or drink alcohol, and buy a water filter. For more information see: Toxin avoidance and M.E. http://www.hfme.org/toxinavoidance.htm I have also been advised at Breakspear not to drink caffeine so I would advise this too. There a complicated mechanism for why you shouldn’t, but this email is getting long!

So it would involve cutting down on things like plastic drinking bottles as the plastic leaks into the water, not eating anything out of tins for the same reason, eating as much organic as you can, and avoiding using chemically soaps and stuff. I buy nearly all my stuff from the Green People. www.greenpeople.co.uk and http://www.hennaherbals.co.uk/ They will cost more than most cheap brands. But it is worth it. Especially as I was absorbing chemicals from my shampoos and make up into my body. These chemicals are now helpfully blocking my mitochondria from making energy.


ð c. Step c is about nutrients. http://www.hfme.org/quickstartguide.htm
Start getting some nutrients in. Slowly work up to taking a full daily-dose of a good quality multivitamin and mineral product over weeks or months depending on your sensitivity level.

(I would recommend Nutrient 950.) http://www.purebio.co.uk/downloads/Nutrient_950_280.pdf

You can buy it here
http://www.amazon.co.uk/Pure-Encapsulations-Nutrient-950-Capsules/dp/B001AOFJCE/ref=sr_1_3?ie=UTF8&s=drugstore&qid=1308176257&sr=8-3


This should last you 3-5 months because you would start slow and build up the dosage. The maximum dosage is 6 tablets per day. This is not a Breakspear product, but is the best multivitamin and mineral product Breakspear uses. It is hypoallergenic so it is sensitive. It is well absorbed and it doesn’t contain any of the chemicals that most supplements and meds do, which can do you more harm then good.


Once you're taking a half or full daily-dose of the multi, start to slowly work up to taking some extra vitamin C every day. Aim to take at least 5 - 10 grams daily orally in divided doses or 1 sachet of liposomal vitamin C daily, or both. (If you feel confident about raising the dose further there is no problem with going up to a bowel-tolerance dose now, or the liposomal vitamin C equivalent, but this is optional.) http://www.hfme.org/researchvitamincandme.htm

This is the best vitamin C to take. It is hypoallergenic and easily absorbed. I believe the powder is cheaper. You need a buffered vit c because otherwise it is too acidic for your body. This is the problem with most cheap vitamins. They can do you more harm than good and your body finds it hard to absorb.
http://www.purecaps.com/itemdy00.asp?T1=A12


ð d. Make sure you're having at least two bowel movements daily. Constipation places a toxic burden on the body and can even be fatal in extreme cases. If dietary changes and making sure water intake (2 litres daily, or more) is adequate isn't enough to ensure two bowel or more movements daily, a daily vitamin C or magnesium flush may be helpful. For instructions see the section on treating specific symptoms in: http://www.hfme.org/treatingmethebasics.htm Coffee enemas can also be used for this purpose, if disability allows. See: http://www.hfme.org/coffeeenemas.htm


(That is the end of point 2 on the treatment program. There are 8 stages in total. You can see the first two links for more information.)

So my recommendation would be: make slow changes with your diet and your toxic load e.g. by getting filtered water and chemical-free toothpaste. Start taking the multivitamin I recommended. Then when you are up to a full dose of that, consider adding more vitamin c than what you are already taking.) For what to do next read the rest of the articles. Obviously you may be able to afford Breakspear by the time you have gotten to the end of step 2.

What you need to do at the moment is start allowing your body get the nutrients it requires to heal you. And reduce the amount of toxins you are putting into your body. Eventually this will make your strong enough to proceed with things Breakspear will do for you. For example getting rid of infections and heavy metals. I cannot advise you on this as I have no idea what specifically they will find on the tests. Therefore I can only help you try and get your body strong so that when you have saved the money you need, you can go to Breakspear and have the testing.

A lot of what Breakspear does is deep healing. Like getting rid of toxins. However all these deep healing things they do are likely to make you temporarily worse. For example, getting rid of toxins and heavy metals will release them into the blood stream in the process. Therefore, you will need to be strong enough first. This is where you can start building your defences before hand.


Carbon Dioxide Deficiency

In May 2009 I started collapsing and having severe myoclonic jerks, paralysis, slurred speech (or none at all) blurred vision (but only when I was strong enough to open my eyes), noise, light, and touch sensitivity, pins and needles, tremors, etc. This would happen if I overdid it. At the time, this was only by sitting up, getting hot or cold, stressed, or concentrating too much on the television or reading. I would have the seizure-like episodes for hours. It would take me hours to recover afterwards. Often two hours to talk again, and three or more before I could focus or read.

I wrote the following in last December about how I treated was diagnosed with hypocapnia, Carbon dioxide deficiency, and how this was treated. I spent 18 months in bed until May this year and am a lot better now. I had bad sessions where I would get myoclonic jerks where your whole body or parts of it have big jerks, sometimes I would end up six inches off of the bed or throw myself on the floor etc... At the same time I would become paralysed, noise and light sensitive, have blurred vision, slurred speech, pins and needles etc...at my worse during some of the 18 months when I was mostly bedbound, I would have these episodes all day. During a collapse my body would basically shut down and my hands feet would get colder and go blue, my fingers would go numb, nobody could draw blood from me when like this either as my veins shut down.

I went to the neurologist at Breakspear and was found to have low levels of carbon dioxide due to. I know people with ME who had similar issues who have improved since raising their CO2 levels. And I have improved so much too for the same reason. I only get them rarely now. When I'm too hot/cold/hungry/stressed/or over exert myself. I have had my CO2 levels retested and they are pretty much normal now.

If you think you have this then I shall explaing something called Buteyko breathing which raises your CO2 levels. It is not the quickest method of improving but it obviously costs a lot of money to go to Breakspear. The breathing is free and it helped me a lot.

Do you also find you are air hungry? Like you cant get enough oxygen? This is also part of the problem. Although it is false because your body thinks it is oxygen you are low on, so you breathe faster and are lowering your CO2 levels. You end up with something called Chronic Hyperventilation syndrome.

The trick with the Buteyko breathing is to breathe in quickly and out as slowly as you can. At first it feels like you are starving your body of oxygen. You want to hyperventilate but you shouldn't. Eventually as your levels of Carbon Dioxide rise, it gets easier. Your body doesn't panic so much as you are doing it. And you find you can hold onto the breath for longer and longer before breathing out. You can find out about it on the internet and seeing how long you can hold your breath for is a good measure of your improvement. You should practice this daily increasing the time you do it for as often as possible. Eventually it becomes second nature and you can do it without even thinking.

You can google to find out more about these things. It is a real situation which basically can happen to people with infections and valid medical problems. I had ME a long time before I developed the CO2 deficiency as a result.

This is the best explanation I have found about both the C02 deficiency and Buteyko breathing: http://www.epsom-sthelier.nhs.uk/our-services/a-to-z-of-services/diagnostics-and-pharmacy/pathology/immunology/chronic-fatigue-syndrome/patient-information-leaflets/?assetdetesctl515399=20146&categoryesctl515399=289

At Breakspear they can give you a face mask and C02 if you can afford this, which works quicker than the Buteyko breathing.



Low Dose Naltrexone

I wrote the following about my experience with Low Dose Naltrexone and how it got me out of bed in May 2010. It does not work for everyone, but it helps a lot of people.

I have M.E. (a neurological illness which can have an autoimmune/inflammatory aspect and does with me) and Crohn's Disease (an inflammatory autoimmune illness of the intestines.) I became so seriously ill at the end of 2008 that I had to stop my medical degree half way through and was bedbound for the best part of 18 months. I now go to a private hospital where I am treated for the above conditions and more.

In May 2010 i started paying £48 a month through this private hospital for LDN. After 1 week of taking it, I was out of bed. After one month I could walk a mile. After 2 months I could walk two. I have had a couple of setbacks in the meantime, but can now walk 3.5 miles. I have had improvements in the quality of my sleep, neurological symptoms, levels of pain, and fatigue amongst other things. And in terms of my Crohn's it has been virtually in remission. I rarely get any pain, no blood, very little bloating, and I can be a bit constipated, (I tend to this anyway because i have a small stricture.) but actually most of the time I forget I even have Crohn’s, although to be fair I only ever had a mild case.

You can get a form from the LDN trust to tell your GP about LDN, get your GP to prescribe you the LDN, either on the NHS or privately, and you can get LDN for £17.50 a month. Or free if you can get it on the NHS.

I know many people with a variety of illnesses who have been helped by the drug. It has very few side effects and does not suppress your immune system. It does not work for everyone and it is not a miracle cure, but it is a licensed drug, used off label in a wide range of autoimmune conditions and cancers.

If you or anyone else you know wanted try the drug, they would have to find a doctor willing to prescribe it, pay for it, and stop all immune suppressants and opiate drugs before taking it. Although there are some doctors who will prescribe it on the NHS. Both my GPs tried to get me funding for it, but the funding bodies turned them down in Devon and in Hertfordshire.

The drug has virtually no side effects in the long term apart from some people can get vivid dreams. However, it is recommended that people start on around 1mg a day and build up to a maximum of 4.5mg. It is found that people who start to high or increased too quickly can get an exacerbation of whatever symptoms they have as part of ME, (or other illness.)

Now because I went to Breakspear, I had the LDN tested and put in my vaccine, which I took for 2 weeks before starting it. Then when I did I started at 3mg straight away. I had vivid dreams for a week and then I shot up health wise! It got me out of bed after 18 months!

I have read the following: you are meant to take LDN at night. At least after 9pm, but in the summer it needs to be later. At least an hour after dark. So I take it as late as 10:30 at times. You can take it anytime up to 2am. You should take it on an empty stomach.


These sites are useful

http://www.lowdosenaltrexone.org/

http://www.ldndatabase.com/cfs.html

http://www.ldnresearchtrust.org/ They have forums as well.

http://www.fiikus.net/?ldn

http://ldn.proboards.com/index.cgi More forums.


If you can, spread the word about LDN. It saves peoples lives. People with terminal cancer, motor neurone disease, parkinsons, alzheimers, Inflammatory Bowel Disease, M.S, etc…have had their lives saved by this drug. And yet for others with the same illnesses it doesn’t work at all. They need studies to find out why, but getting anyone to do any studies on LDN is very hard. Although, there are a few basic trials out there, not enough that you can get the drug on the NHS for these conditions. It is currently used in high doses of about 50mg in people with alcohol deficiency and has been proven safe.

Because it is a cheap drug available for decades, the pharmaceutical companies won’t fund trials for a drug, which has lost its patency and will earn them no money. So information about LDN is passed around by patients like me and a few determined doctors!



Please, pass this email onto your friends. If anybody wants to ask any questions, email me lauradunks at googlemail dot com. Oh and please be sensible. Ask your doctors before you do anything.

Good luck!

Laura
~X~

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