It’s been about 2 months since I first went to Breakspear Medical, a hospital which specialises in diseases relating to the immune system. Before I went, I had heard both good things and bad things about Breakspear – and unfortunately my experience also hasn’t been completely perfect, especially as time went on. I wanted to be honest about my experience so far, both good and bad, and not only report the positive bits – because it wouldn’t be truthful for the people who were thinking of going there.
My first appointment went really well. We had stayed overnight at a nearby hotel which was 2 minutes away from the hospital. I wasn’t able to sit up very much so by the time I got to the hospital I needed to lie down – they gave me a bed to lie down in until I saw the doctor, which helped a lot! Then I went to see my doctor, and she was very kind and she knew about Simon Wessley (the psychiatrist who one of the main proponents of the Chronic Fatigue psychiatric theory I.e you think you’re ill so you’re ill) and she criticised him – which was a good sign! She also knew exercise can be bad for M.E. The doctor said she suspected I had a lot of problems with my stomach, which could have been contributing to immune system dysfunction and leading to autoimmune disease. So she suggested I have blood tests (and stool and urine tests) – I was already prepared for this – in my research I found that Breakspear do run a lot of blood tests to try to find out what’s wrong, so all three of us (my mum, martyn and I) had saved up everything we could for 6 months (and a credit card) to be able to afford the tests. These kinds of tests are not routinely run on the NHS, mostly due to cost.
It took 4 weeks for all the test results to come through – because some of the tests are really specialised:
- Very high antibodies to HHV-6, indicating an ongoing immune response to HHV-6, as well as very high antibodies to Epstein Barr Early Antigen, indicating that I am stuck in an acute stage of infectious mononucleosis. The lab which had run these tests had commented that the results show an ongoing viral infection.
- Positive Antibodies to Malaria – This means I have been infected with malaria and my body has tried to fight it by producing antibodies! The strain in India (where I went in 2009), is called P.vivax – it doesn’t commonly kill but causes disease and ongoing flu like symptoms and fatigue etc. It also can go into the liver and stay dormant and randomly reactivate in the body. I was very ill in India for a month with relapsing fever, chills etc but I wasn’t tested for malaria and the doctors there said I was just ill because I was English and couldn’t take the heat! In Sept 2015, I was diagnosed with lupus, and the treatment for that is, strangely, anti malarial tablets every day, so I’ve been taking anti malarial medication every day for the past 1 and a half years. I recently did a blood test which confirmed there was no malarial parasites currently in my blood which means the anti malarial tablets have done their job. Usually treatment for malaria is a few weeks and I’ve been taking these for over a year, without even knowing I had it!
- A pathogenic (disease causing) infectious overgrowth in my stomach caused by the bacteria Klebsiella Pneumoniae. Usually NHS doctors don’t take much notice of it unless it goes into your bloodstream, because then it causes serious infections and sepsis. But in my research I found out that having a stomach overgrowth of Klebsiella is strongly linked to the onset of autoimmune diseases like Ankylosing Spondylitis. This bacteria is usually picked up in hospital settings and some strains are “superbugs” I.e resistant to some antibiotics. It causes a whole host of stomach symptoms including diahorrea, cramps and intense pain which I have struggled with since I was a child and usually passed off as “Irritable Bowel Syndrome”. I also had high secretory IgA in my gut indicating an unregulated immune response – which is saying my body is fighting the infection, and I also had blood in my stools in the form of red blood cells, which shouldn’t be there.
- Antibodies in my blood to stomach bacteria – showing the bacteria has attempted to go into my bloodstream (which can cause sepsis) but my body is fighting it
- A severe infection of yeast in my stomach – which in itself can cause fatigue, food and chemical intolerances, pain, bloating, nausea – all of which I now suffer with
- Antibodies to many gluten and wheat proteins in my blood, including some that the NHS use to test for coeliac disease. I cut out all gluten as soon as I saw this result!
- Histamine intolerance – I don’t have enough of an enzyme called DAO which is used to break down histamine in histamine rich foods which I eat regularly like tomatoes. aubergine etc. So histamine (which causes allergic reactions) builds up in my body causing allergy like symptoms and muscle and joint pains, headaches etc. I can take tablets to replace the DAO but they are made in Germany and really expensive – so for now I’m just avoiding most of these foods.
- Severe vitamin deficiencies of B2, B5 and B6. The other B vitamins weren’t tested but I have no doubt I am also deficient in them too, if Im deficient in these! These vitamins are really essentially to human functioning – deficiencies lead to muscle weakness and neurological symptoms such as pins and needles both of which I do have, and all sorts of other neurological defects. I’ve been put on a high dose B complex supplement so I’m hoping in a few months my deficiency will be better.
- Very low (almost nonexistent) serotonin and dopamine. When I saw this, I was thinking “whaaat?!” because even with all these these health issues going on, I don’t believe I am clinically depressed – I still remain hopeful and happy and excited about what the day brings. But then my boyfriend pointed out that very low serotonin is also linked to high anxiety and panic attacks – which I do get a lot of. My heart races nonstop. An interesting fact is that the body (that is, the stomach, because 95% of serotonin is made in the stomach!) cannot make serotonin and other neurotransmitters unless it has sufficient B5 and B6, and the stomach also needs to be in good condition. And I have a huge deficiency in these vitamins so how could my body make serotonin?! I was excited to discover this because this also explains part of my longstanding high anxiety state and panic disorder.
- Krebs Cycle dysfunction – essentially my body was lacking the ability to convert glucose to energy sufficiently in the cells – if all the cells in my body don’t have energy, then it explains the huge amount of fatigue I get (which isn’t at all like normal fatigue which people get after a days work). It is the horrendous fatigue I get from just sitting up for 3 minutes or holding a conversation. This is one of the defining characteristics of M.E patients and is being researched a lot in America now. There are some amino acids that can help with this which I was prescribed, but I later found out through my own research that these amino acids interact in a harmful way with lupus antibodies. So I won’t be taking them, and anyway I think Krebs cycle dysfunction may be linked to all the infections I have which are playing havoc with energy production.
- Allergies to nickel and formaldehyde (found in many household items)
- My lupus antibodies had increased from what they were 9 months ago, and some lupus specific antibodies which had been borderline before, were now firmly positive. This meant my lupus had got worse after the graded exercise trial I had been enrolled in by the NHS.
- Borderline result for Lyme disease (a tick borne disease found in areas I had visited like Richmond Park). (Edit: more on this coming soon in my next blog post!)
- Positive for past amoebic dysentery, a stomach infection caused by a parasite amoeba. The antibodies indicated a past or treated infection – since I’ve never been treated for it, I assume my body fought it off. But they can cause extensive damage to the stomach, even long after they are gone.
All of these results were a lot to take in! And I was in a very panicked and upset state as soon as these results started coming in. But I was looking forward to the follow up appointment where I could discuss these results. I remember the doctor saying she believed my stomach was at the root of a lot of my issues so I wanted to know what she made of my results.
I have had a lot of stomach problems since I was a child – including ongoing diahorrea alternated with constipation, huge amounts of blood and pain when I went to the toilet – I get this a few times every few weeks and it is terrifying, cramps, intense pain, feeling like there are shards of glass in my upper stomach. When I was a baby I used to cry in pain and during primary school I had to be taken out of school a lot because of the pain. As I grew older, the pain and bleeding didn’t go but instead I learned to live with it and hide it more. Even during work and university I was in pain every day… I think most people would be surprised to know this as I learned not to talk about it too much. I couldn’t take oral painkillers as they hurt my stomach so much. I can’t take many tablets due to my stomach pain. I’ve been investigated under the NHS and been told nothing is wrong. How can nothing be wrong when you bleed when you go to the toilet for 27 years?! Now at Breakspear I’ve found out that I have these infections in my stomach – and I do believe that I’ve had these infections for a long time which have caused a lot of my problems, and because they weren’t tested for, they weren’t found until now. Having long term infections in a stomach can cause a lot of harm. I’ve also had a lot of issues with different foods causing me pain. And it is known that stomach infections can lead to all sorts of issues with food including food and chemical sensitivities. Even viral infections can lead to severe gut dysfunction. So to me, and because of how ill I am from these infections, I knew I had to treat the infections and viruses first.
Unfortunately my appointment didn’t go as well as I had hoped. The doctor read out all of my results, with hardly any comment at all for the majority of my results (all of what I’ve written above is purely my own research after I spent a lot of time looking through research papers!). She lingered only on a few results – mainly the allergy tests which showed an issue with nickel and formaldehyde, and she said this meant I probably had a lot of allergies to other things. She prescribed anti virals as I asked for them, and a probiotic for my stomach. She also said I should go on a detox programme to get rid of the chemicals – I’ll be honest, I’m not keen on doing any treatments, as a priority, for this, especially when I have so many infections. I think the body (liver and kidneys) should naturally be able to get rid of many chemicals like perchlorate, if it’s working better. She said upregulated IgA in my gut was due to food allergies – whereas even my test result pointed out it was due to stomach infections! The doctor I should do a treatment called Low Dose Immunotherapy – which is fine as a treatment, except what it does is treats food allergies but I knew a lot of my food allergies were secondary to the infections, and also LDI was very expensive. It felt rushed. We left the doctors room feeling very uneasy, and it was only afterwards that we realised Klesbiella Pneumomiae wasn’t mentioned, I was given no treatment for the yeast infection, the viral infections didn’t seem to be a priority, my stool test wasn’t commented on much, and the fact my lupus had got worse and autoimmune conditions are strongly linked to infection wasn’t commented upon. In fact it seemed the doctor believed most if not all of my problems were caused by food allergies! I think other people may not have been uneasy and may have been willing to accept her word – but I am not someone to stay quiet especially as we don’t have much money and had already spent so much.
So the next day my mum and boyfriend went to ask for another urgent appointment to see the doctor. And we did manage to see her. I told her my concerns and how I believed I needed to treat all my infections – not just allergies. When I asked about Klebsiella, I was told “everyone has Klebsiella in their stomachs, don’t they?” I was stunned at that comment. Because firstly, no, not everyone has it in their stomachs, and even if someone does have it, a lot of the time the body and the gut (if there are enough good bacteria) is able to keep it in check so it doesn’t cause an overgrowth and a lot of symptoms. Unfortunately for me there is an overgrowth – and that is what is linked to disease and autoimmune conditions. This bacteria had also attempted to go into my bloodstream! My boyfriend asked me afterwards, why did the doctor do all these tests if it would be disregarded or they don’t know how to treat them?! He has a point.
In the end I was prescribed a herbal treatment for it – Grapefruit seed extract, unfortunately as I have a lot of issues with citrus I don’t think it would be able to help me. The doctor also said she believed eating wheat was at the root of many of my lupus, and while I believe it was a contributing factor I firmly believe infections are more important. I was also told I needed to do the LDI (food allergy treatment) as only then would my stomach be well enough to tolerate medicines like antivirals. I later found out that actually these anti virals and vitamins are available on IV drips through Breakspear, which would have bypassed the stomach and worked to clear the infection from my bloodstream!! This really upset me, as it would have cost me less to do the IV treatment than do the LDI treatment, and I could’ve done it a month ago! It’s been a month since I started LDI and I still can’t take many tablets, either antivirals or high dose vitamins, which I actually need to treat the infections! I tried a supplement recently and was in a lot of pain. So you can see why I’m upset! I should have listened to my gut instinct that the infections are the first priority to treat 😔
My initial experience is that Breakspear do offer treatments that aren’t offered on the NHS for things like viral and some bacterial infections, but I wish I had known more when I started. I think you will need to do research yourself and find out if what they’ve recommended is best for you – and pick just what will really help you. The doctors there also have different specialisms. Some of the doctors are big on LDI and detox at Breakspear, and as you can tell I don’t think they address the primary issue when M.E and infections are the problem. If you have the money to be able to afford both low Dose Immunotherapy (LDI) and other viral and bacterial treatments, and are happy to do so, then its fine. If you don’t, and you are told to do LDI as a priority, and you then don’t have much money left for other things (and it seems a lot of people are told that, because so many people who go there have infections which cause food intolerances) then I think that’s not good at all. LDI is pushed as a priority for a lot for M.E patients. It helps many people but if you have tummy issues, a severe infection, and allergies are not your primary illness but your stomach can’t deal with taking many tablets, just so you know – there is the option of IVs instead. And most likely after the infections have passed, food sensitivities might reduce too. I’ve now asked to switch to a different doctor for all the reasons mentioned above, and because I didn’t want to feel as if I need to push to get treatment, or feel uneasy about the infections not being taken seriously. Also dealing with all this, having to do my own research because I couldn’t get answers from my doctor, it’s so stressful when I am so ill.
I also saw a nutritionist there. She was lovely and kind, but unfortunately her food plan made me worse. Having discussed all my symptoms, she put me on a high protein, slightly higher fat diet, which should give me energy, only 3 meals a day with hardly any snacking and no sugar. For 2 weeks I was in agony. In the middle it seemed like I was ok, but on those days it was because I wasn’t actually following her plan! I can only eat small amounts as my stomach can only hold a little bit of food, and I have to eat tiny amounts every few hours or I end up in pain (overeating also causes me to become ill!), so having 3 big meals a day and no snacks was making me worse. Also my body simply couldn’t digest that much fat and protein or nuts and I was in horrendous pain, which also set me back because whenever I tried to take medication, I ended up in even more pain. So I quit her plan and just went back to my old diet, just with less refined sugar and no chilli and caffeine. and I feel much much better for it – still in pain but nowhere near as much as on that diet!
But it’s not all bad! There’s plenty of good! I wrote my bad experiences because I know I’ve said before how amazing my initial experiences are, and I wanted to be honest and talk now about the not so good things that happened since then, for those that were thinking about going to Breakspear. But now the good stuff, and why I’m happy I still went to Breakspear..😊
I found out what’s wrong with me. This is invaluable because prior to coming here, I didn’t have a clue what could be so wrong with me. In fact I thought I had glandular fever in the past, and it just left my body in a bad state. Instead I’ve found out I have ongoing glandular fever and other infections which can be treated! Although antivirals don’t kill the virus completely, they can suppress the virus until I can work out how to get the immune system working properly again. And even though I had to push for it, I got prescribed some of the medicines that I wanted and which I need to get better. They’ve done far more for me at Breakspear than the NHS was able to do. And armed with this knowledge of what’s wrong with me, I have even more hope for the future!
In the meantime I am now looking into treating my stomach myself with plenty of fermented foods to build up good bacteria levels and probiotics, and possibly antibiotics but unfortunately may also have to go elsewhere for treatment in the future, where they know more about the stomach, as I also have other issues with my stomach and I can’t keep living with pain and other symptoms!
Also, a few weeks ago I started including eggs and oily fish in my diet such as salmon as I read about how beneficial omega 3 fatty acids are to inflammatory diseases like lupus, and general health as well! In fact they’re essential, and plant sources such as flax do not get converted to the most beneficial forms very efficiently. I know of people with joint and muscle pains who have been helped by eating fish. I have to admit I’ve seen a difference in my health just from this, and I do have more energy. It was very difficult to do at first, as I was a vegan! But I realised I need to put my health first.
Now that I know how many infections I have, I realise how vital it is for me to rest. The herpes family of viruses (including EBV and HHV6) are known to multiply under stress. All my life I have been under tremendous stress, and I know it hasn’t helped, I find it very hard to relax as my mind is always working, always trying to figure out stuff, but in those moments that I am able to meditate or cross stitch or draw or read, things get quieter. So although I am still quite stressed about my treatment plan, the next step is to start taking antivirals as soon as my stomach gets a bit better in the next few days! And hoping my stomach can deal with it! 😊
I hope my blog post helps people. Again, I was unsure about whether to post all this because I didn’t want to come across as too negative. But this was my true experience, and I hope it will help others.
And here’s a picture of my bear Pinkshells.. because she’s so cute! 💜