Our house has poisoned our son. We now need your help to treat him.

My partner’s son has just been diagnosed with one of the same diseases she has. It’s come directly from our social housing, through no fault of our own.

So, we’re having to pay for his treatment. And sadly we need your help to try and get him well, as the NHS don’t deal with it. While this illness is not even recognised in the UK, it could potentially affect millions of people.

Rampant chronic illness

My partner Nicola Jeffery is chronically ill and disabled. In short, she lives with:

Many of these are not recognised on the NHS. So, we’ve had to see private medical professionals to get her treated. Some of this was funded by my mother. Other aspects, like the ME, have been paid for by crowdfunding and donations from friends and the public. We are very grateful for this. You can read more about that, here.

But we now have confirmation that Nic’s son (called Lil Man in this article) lives with one of the diseases she does. The problem is, again, the only treatment available for it is via the private sector.

Please continue reading below to find out more about this. But if you can help with the £1,500 cost of Lil Man’s treatment you can donate via:

http://www.paypal.me/NicolaCJeffery

Mycotoxins

Mycotoxins are secondary metabolites given off by mould and fungi. They cause disease. As the World Health Organisation (WHO) wrote [pdf]:

Mycotoxicoses are diseases caused by mycotoxins, i.e. secondary metabolites of moulds. Although they occur more frequently in areas with a hot and humid climate, favourable for the growth of moulds, they can also be found in temperate zones.

Exposure to mycotoxins is mostly by ingestion, but also occurs by the dermal and inhalation routes. Mycotoxicoses often remain unrecognised by medical professionals, except when large numbers of people are involved.

There’s a lot of literature on illness caused by eating mycotoxins. 25% of our agricultural products are infected with them. Interestingly the UK government recognises this. There are laws in place surrounding the levels that the Food Standards Agency (FSA) permits in products. It’s website notes that:

Mycotoxins can cause a variety of adverse health effects in humans including cancer (some are genotoxic), kidney and liver damage, gastrointestinal disturbances, reproductive disorders or suppression of the immune system. Antitoxins are the most harmful type of mycotoxin, they can potentially cause cancer or problems with digestion, reproduction or the immune system.

But what’s not even recognised in the UK is the impact of mycotoxins from damp and mould in buildings. And potentially, this could be making millions of people ill. Yet no one wants to talk about it.

The health risks

As a US government research site noted, symptoms of Mycotoxicosis include, but aren’t limited to:

fatigue, neurocognitive symptoms, myalgia, arthralgia, headache, insomnia, dizziness, anxiety, depression, irritability, gastrointestinal problems, tremors, balance disturbance, palpitations, vasculitis, angioedema, and autonomic nervous system dysfunction.

Specific conditions include:

infections and mycoses, chronic and fungal rhinosinusitis, IgE-mediated sensitivity and asthma, other hypersensitivity reactions, pulmonary inflammatory disease, immune suppression and modulation, autoimmune disorders, mitochondrial toxicity, carcinogenicity, renal toxicity, neurotoxicity, and DNA adducts to nuclear and mitochondrial DNA causing mutations. A significant mechanism of injury includes oxidative stress…

A health dead end

Yet when you look for Mycotoxicosis on the NHS website, it doesn’t exist. The nearest thing is Aspergillosis, which is a condition caused by mould but only related to the pulmonary system.

Nic was already under the care of Dr Sarah Myhill. As part of her investigations into Nic’s health she wanted her to have mycotoxins testing.

But, this wasn’t straightforward. Testing for mycotoxins has to be done in the US, with a private UK laboratory acting as a middle man. So, we got the testing done, her results were positive, and she had a six month course of treatment.

We always wanted Lil Man testing as well. So, last month he did the same thing.

US testing results

These were Nic’s results:

Myco perameters.png

Nic Myxo.png

To break them down:

  • Aflatoxins are from the mould fungi family Aspergillus. Among other things like immunosuppression, they have been linked to an increased risk of liver cancer. Dr Myhill told us it was very unusual to see Aflatoxins present, as they generally are only present in contaminated food in developing and Asian countries.
  • Ochratoxin A is from the fungal species Aspergillus or Penicillium. It has been linked to cognitive dysfunction and depression, kidney problems and immunotoxicity, among other things.
  • Mycophenolic Acid [pdf, p3] is from the fungal species Penicillium. It is usually found in conjunction with Ochratoxin A. It can cause immunosuppression.
  • Citrinin is also from the Penicillium fungi family. It’s effects are similar to Ochratoxin A.

So, these were Lil Man’s results:

Lekari Myco.png

As a reference point, a Turkish study found the mean level of Ochratoxin A in the sample population to be just over nine ng/g creatinine. At this level, the study pointed to potential health risks, including oxidative stress. So, both Nic’s and Lil Man’s were significantly higher.

In some respects, Nic’s was more concerning. This is because she already lives with so many underlying illnesses and conditions, that the mycotoxins were just making her so-called ‘viral load’ even heavier. The Ochratoxin A was the most problematic.

Her son’s result was expected. But we didn’t think it would be as high as it was (25.97 for Ochratoxin A versus Nic’s 13.44). Literally, at the top end of the lab’s testing scale. Why was it expected? Because we guessed his bedroom had effectively been poisoning both of them.

Flooding

Around seven years ago there was a flood from the neighbouring property into Lil Man’s bedroom. Our housing association came and tidied up the plaster work, but did not dry the room out. A while later, Nicola noticed the floor boards sinking. So, she called the housing association again.

A contractor lifted up one area and all the floor joists were rotten. But they merely put MDF over one small area, and did nothing else. So, effectively the damp from the flood was left untreated.

Now, there is no visible damp in Lil Man’s room. Meanwhile, there is in our bathroom. So, you’d be forgiven for thinking all was well.

But as part of our investigations into Nic’s health, we went to University College London asking if their civil engineering department could do some tests. At this point we knew her mycotoxins results and wanted to know why the Ochratoxin A was so high; we suspected Lil Man’s bedroom. Because Ochratoxin A specifically comes from water damaged buildings. Also, the Penicillium family of fungi is also commonly found in water damaged buildings. So, two of Nic’s other mycotoxins were explained by this.

Groundbreaking testing

The excellent Dr Yasemin Aktas happily obliged with our request. Her team came and did what’s called a Mycometer survey; something they pioneered. The testing has been approved and is used by the Danish government. Essentially, it measures the levels of mycotoxins in the air and on surfaces.

The team did the whole of our upstairs. And the results were as we suspected: Lil Man’s bedroom was the highest; the readings almost being in the red (toxic) zone. The level’s lowered the further you got away from the wall where the flood was; that is, his bedroom, then the toilet, then the bathroom, then the master bedroom:

So, thanks to both Dr Myhill’s testing and UCL’s survey, we can say very confidently that Lil Man’s bedroom has made both him and Nic ill.

A 13-year-old with chronic illness

His symptoms fit with this. He has:

  • Repeated bouts of upset stomachs, juxtaposed with difficulty going to the toilet.
  • Repeated chest infections after colds, with coughs sometimes lasting for months.
  • Short term memory issues which are very marked; difficulty concentrating and some functional disruption.
  • Far more fatigue than should be witnessed in someone his age.
  • Skin issues with repeated inflammation, coupled with excessive discharge in his eyes.

We have to get this sorted for him. But because the NHS doesn’t recognise it, we’ll have to treat him privately.

We know straight off this is going to cost, in total, around £1,500. This includes medication and repeated testing at the end of the six month course of treatment.

We’re currently on Universal Credit, with me caring full time for Nic while doing as much work as I can to try and get us off benefits. So – we need people’s help to pay for Lil Man’s treatment.

If you can help towards the £1,500 to try and get him better, please donate via PayPal:

http://www.paypal.me/NicolaCJeffery

But it’s not just Nic and Lil Man who are affected.

Millions at risk

Estimates at the number of renters living in damp or mouldy homes vary. But a study by pest control company Rentokil estimated that 5.8 million people lived in rented (private or social) homes with “damp or condensation” problems. But other figures put it even higher.

On the lower side of estimates, and property investigations service CIT said that 12% of social housing had been subject to a complaint about damp or mould. That around 600,000 homes in the UK. Or, to put it another way, at least one in 10 UK residents (just over one million) who live in social housing have problems with damp, mould and/or condensation. Speaking from personal experience, this is probably a vast underestimate.

In private renting, Shelter estimated [pdf, p20] that 38%, or around 3.42 million, private renters had problems with damp.

So, either way, over 4.4 million renters live in damp or mouldy homes. But, this may be the tip of the iceberg. Because testing for damp and mould in the UK does not factor in mycotoxins; hence UCL’s research is so groundbreaking.

Housing associations: washing their hands?

Mould and fungi give off what’s known as hyphal fragments. These fine bits of the organism travel around the environment, and are one of the sources of mycotoxicosis via inhalation and dermal routes. But even when these hyphal fragments die, they and the mycotoxins in them still remain dangerous.

The point being – Lil Man’s water damaged bedroom came back as ‘dry’, therefore safe and not a problem. This was when our housing association’s surveyor came round and tested it. But UCL’s testing told a different story. Because in layman’s terms the ghosts of the mould and fungi are still there; constantly being moved around from the walls and floor cavities they inhabit.

All this means our housing association will not deal with the issue. We’ve been through all its processes and have reached a dead end. So, we’re still living in a property that is effectively toxic. Our next course of action is to take this to the Housing Ombudsman and politicians to try and get help for us. But we also intend to affect change up and down the country.

A public health crisis

Mycotoxicosis is probably rampant across the UK. But because the NHS, housing associations and government don’t even recognise it, people’s symptoms are probably dismissed as mental health, diet-related or due to their lifestyles. We don’t have enough fingers to count the number of people on our estate alone who have far worse damp and mould than us; have chronic illness but yet are not getting any medical or social support.

There is a public health crisis across the country. Yet no one will admit that it exists.

Spain: the only option when the DWP and NHS abandon you

This is a story we believe many people are living through, right now.

It is sadly a desperate plea for financial help. But it’s more than that. It’s a statement on the position that the Department for Work and Pensions (DWP) and NHS leave hundreds, possibly thousands, of people across the UK in. This is just one example.

My partner has to go to Spain for life changing surgery. But it costs. The initial amount needed to begin the process is £8,000. 

You can donate via PayPal at http://www.paypal.me/NicolaCJeffery

Read below to find out why we’re having to do this.

I wouldn’t wish chronic ill health on anyone. But if people could spend a day in my partner Nicola Jeffery’s body, then maybe the world would be a very different place.

She lives with 16 different illnesses and conditions. You can read more about that here. But sadly the UK’s public health service doesn’t treat many of these. Some of the ones it either doesn’t deal with, or doesn’t treat correctly, are:

I gave up work full time to care for her. Since then, the DWP awarded her just the standard daily living component of Personal Independence Payment (PIP). You can read more about that here. We sent them a Mandatory Reconsideration. It’s been 11 weeks and counting for its decision. My claim for Carer’s Allowance has now been seven weeks, complicated by the fact I am self-employed. Because of the waiting on these we cannot apply for any housing support. We are now in a very dire situation with no seeming way out.

A ‘thank you’

We’ve been fundraising to continue Nic’s ME treatment under the care of the amazing Dr Sarah Myhill.

We raised enough to buy the majority of her ME treatment for six months, so thank you. This cost just over £1,800 in the end.

This is just about it, excluding the £500 worth of antivirals and £400 worth of mycotoxins treatment (because both are prescription only):

MEDS 1

As an example, this is the cost of six months worth of thyroid and adrenal hormone replacements:

MEDS 2

I note some people have said on Twitter ‘why can’t the NHS provide these?’. Firstly, because the NHS repeatedly claimed she had no thyroid issues. This, after proper evaluation, was not the case. Secondly, if it did diagnose it, Nic would be given chemical substitutes, which we do not believe in. The hormone replacements she is on are totally natural (bovine and porcine) – and her blood work has shown they have had the same effect as their chemical counterparts.

We are confident this regime will resolve Nic’s ME. We’re loathed to go into detail until the course is over, but suffice to say the signs so far have been good.

What we can say is that she was living with polycystic ovary syndrome, first diagnosed in 2009. But since starting Dr Myhill’s regime, this has been completely cured. Effectively, the regime for ME has also cured this other illness.

The NHS, meanwhile, says polycystic ovary syndrome “cannot be cured”. We think we know why it has with Nic, and it is absolutely unbelievable when compared to what the NHS offers for those living with it.

Sadly, running parallel to this has been a severe deterioration in her EDS-related CCI and AAI.

‘Rare’, or ‘rarely diagnosed’?

We first discovered Nic was living with these in March. I’d suspected as such, as she was symptomatic of them. So we had a £1,250 upright MRI (not available on the NHS and the only way to properly diagnose the conditions). Then, a Spanish surgeon interpreted the results and confirmed both.

As MEpedia describes, CCI is:

a pathological condition of increased mobility at the craniocervical junction, the area where the skull meets the spine. In CCI the ligamentous connections of the craniocervical junction can be stretched, weakened or ruptured. This can lead to compression of the brain stem, upper spinal cord, or cerebellum and result in myelopathy, neck pain and a range of other symptoms.

 

CCI usually develops as a result of physical trauma such as a car accident, an inflammatory disease such as rheumatoid arthritis or a congenital disorder such as Down’s syndrome. More recently, physicians have reported an increased prevalence of CCI in patients with hereditary disorders of connective tissue such as… (EDS).

AAI is kind of the same. The main difference between the two is which vertebrae are involved.

In short with both, the ligaments holding her top four vertebrae (the cervical junction) in place are floppy due to the EDS. So, the vertebrae are not held in place properly. They move in ways in which they shouldn’t, interfering with many of the nerves that come out of that part of the spine.

We know she has a 42° overshoot of her C1 over her C2 (her top two vertebrae). It should only be 35°. She has brain stem compression due to odontoid displacement (a piece of bone that allows the C1 to pivot on the C2). We know that her facet joints sublax (partially dislocate) on turning her head to both sides.

The effects of her CCI and AAI are systemic and overarching. Vomiting, seizures, difficulty swallowing, loss of bladder control, cardiac and pulmonary dysfunction and weakness in her muscles and joints to name but a few.

Overarching, systemic effects

Nic has numerous conditions and symptoms which I believe the instabilities are responsible for:

  • Gastroparesis and dumping syndrome. These are conditions which seem to alternate in her. The former is where the stomach doesn’t empty properly, the latter where it empties too quickly. Both cause various, severe symptoms like uncontrollable vomiting. They are both probably related to brain stem compression; specifically the vagus nerve. She was free of gastroparesis from August until October 19, when it returned with a vengeance. This was the longest she had been without it. We believe it came back partly due to a strain on her cervical junction which at first resulted in severe pain extending into her thoracic area and down her left arm. But it also flares up whenever she has a ‘crash’ due to the ME, which she also appeared to have. I think the process here is this: any form of exertion results in post-exertional malaise (PEM) due to the ME. This, in part, impairs her already compromised mitochondria function (due to the ME), thus disrupting energy delivery. Therefore, any underlying EDS/CCI/AAI-related issues (like impairment of stomach muscle/nerve function in gastroparesis) are made even worse. Hence when Nic has PEM, her gastroparesis flares up. This time, the additional issues with her cervical junction appear to have been the trigger of it.
  • Dysphagia. This is where swallowing is difficult due to nerve and muscle dysfunction. Again, this is probably related to vagus or accessory nerve interference in the brain stem or cervical junction.
  • Focal autonomic/impaired awareness and tonic clonic seizures. A neurocardiologist agreed with my theory that the below is likely to be the process which leads to her seizures; in my opinion, once again at the root of this is brain stem compression as the heart’s sinoatrial node’s rate of production is ultimately controlled by the vagus nerve:NICOLA SEIZURE PATHOLOGY
  • I can accurately predict (with an 89% confidence rate) when she will have a seizure. This is due to an average 11% drop (versus her usual mean) in both her systolic and diastolic blood pressures the preceding night.
  • Postural orthostatic tachycardia syndrome (POTS). This is where the heart fails to respond properly when posture is changed. It causes dizziness and imbalance. This could be caused by interference with the vagus nerve, which controls the parasympathetic aspects of the heart; essentially heart rate at rest. In short, the baroreceptor reflex is not being communicated to the medulla oblongata in the brain stem correctly. This causes her heart rate to remain increased after going from a supine/sitting to standing position.
  • Peripheral neuropathy. This is loss of sensitivity in her extremities, like hands and feet.
  • Cerebrospinal fluid (CSF) leak. This is where the fluid that cushions the brain and/or spine leaks out due to a tear in one of the duras (membranes). It happened in August during the postictal stage of a tonic clonic seizure. Nic projected herself out of bed, hitting her head and neck on the dressing table. Kings A&E said it was rhinosinusitis. We had to see a private neurologist to confirm the leak. The symptoms passed by the middle of October. But the leak showed that the vulnerability of her cervical junction has increased, as this was the first time she has had one.
  • Reflex micturition/neurogenic bladder. This is an increased need to urinate and a degree of loss of bladder control, which has manifested more since the CSF leak. Nic has to urinate around once an hour, sometimes more – even though her fluid intake is less than mine. Whether this relates to the brain stem compression is more complex. If it does, it may be due to signals from her bladder’s afferent nerves being miscommunicated. Or, it may be faults in the hypogastric/pelvic/pudendal nerves. But if it’s the latter, that may be an indication of a fault lower down her spine; specifically tethered cord syndrome which we need to get her checked for.
  • Cervical radiculopathy. This is nerve interference in the cervical junction, which causes pain to radiate from this area to other parts of the body (depending on what nerves are compromised).
  • Chronotropic incompetence. This is where Nic’s heart rate does not increase appropriately during exercise. I believe this is caused by interference with the cardiac plexus via the sympathetic trunk and/or left vagus nerve; this controls heart rate over 100bpm. But this could also be related to hormone dysfunction due to the ME, as well as the vagus-controlled parasympathetic response to initial heart rate increase.

Wheelchair bound

But Nic’s muscle and joint strength has also deteriorated. It has got to the stage where she sometimes has to use a wheelchair to go out. This is because the weakness in her legs and lower back pain means she cannot walk more than a few metres without having to stop or being in pain. Sadly, one of only a handful of neurosurgeons in the UK who understand the instabilities didn’t think her weakness was bad enough to warrant surgery on her cervical junction.

What he failed to realise is that Nic practised karate to a proficient level as a child/early teen. This has meant that her strength started out as being more than your average patient. So, what the neurosurgeon considers to be strong now, is actually a worsening by Nic’s standards. In this case, one size doesn’t fit all.

Off to Spain

So, we have to begin the process of potential surgery in Spain. Why Spain? Because the NHS doesn’t recognise the CCI or AAI, therefore there are no treatment options available.

This surgery will cost anywhere between £60,000-£200,000, depending on the extent of what Nic has to have done. This will be a separate fundraiser. In short, the surgery involves fusing/screwing her vertebrae together to hold them in place. This is not without it’s own serious complications and risks.

To do this, we have to have more non-NHS tests done, like a 3D CT of her cervical spine, MR angio/venogram, cineradiography flexion/extension and CT of her lower spine to check for tethered cord syndrome. This will be around £1,200 plus consultation/interpretation fees. Then we will need to travel to Barcelona for a face-to-face consultation with the surgeon. The cost of the appointment is around €300 plus travel costs. Nic can’t fly with her instabilities due to the risks posed by pressure changes, so boat or train it will have to be. This makes the trip even more expensive.

We also need to have her genetic testing for Ehlers-Danlos done. This is because there is now a question mark over her subtype. It may be classical. Ultimately, we want Nicola to be tested so her son can then get the diagnoses he needs. This is because EDS’ are inherited conditions. A positive genetic test for her means he won’t have to endure the years of being told his symptoms (some of which he already has) are ‘all in his head’, as his mother did. We don’t want him to suffer in the same way Nicola has. This will be £2,000 each.

UPDATE: for those asking why the NHS cannot help with this. Nicola’s EDS diagnosis has all been done privately, due to two-year NHS waiting lists. The EDS specialist at NHS UCH is now no longer taking patients. This is who we saw privately. We’ve tried to get the NHS to do the genetic testing. But the request from the GP just got bounced back, as did my own request direct to the centre that does the testing.

The additional spinal scans are not available. This is because the NHS does not even recognise Nic’s CCI and AAI. Moreover, if you want cases in point of how the NHS views people who have had spinal fusion surgery abroad, check out my podcasts with Samantha Smith and Victoria Cheney:

CanaryPod: Topple Uncaged meets… #SaveSamantha

CanaryPod: Topple Uncaged – Antonia’s story, part one

CanaryPod: Topple Uncaged – Antonia’s story, part two

All in all, we think this is going to cost around £8,000 to begin with.

Rebooting life

It is a damning indictment of the NHS that any of this has to be private, let alone abroad, in the first place. But Nic is not alone. Google “craniocervical instability” and look under “news” and you’ll see countless other people in her situation. All are fundraising as the NHS doesn’t help.

It’s also a damning indictment of the DWP that the instabilities, plus all Nic’s other illnesses, only ‘deserve’ £58.70 a week.

We hope that once the ME, CCI, AAI and mycotoxicosis (more on that in another article) are resolved as best they can be, Nic can hit the ‘reboot’ button on her life. She has never known being a mother, or an adult, without chronic illness. A whole world of possibilities awaits her, if we can just get her well.

So, once again – if you can help please, please do.

I want to give her some quality of life back. But I need your help to do it. Please donate what you can via:

http://www.paypal.me/NicolaCJeffery