Paul Smith: How a somatization 'diagnosis' almost killed him

Paul Smith, an artist and self-described workaholic, for years experienced weird and increasingly debilitating symptoms, that would come for periods of time and mostly or completely dissipate.

Flu like symptoms, abdominal pain, muscle weakness, confusion - problems with his vision speech and balance - breathing problems where felt like he was suffocating

These symptoms were so intense that at times Paul felt like he was going to die, and so he wrote letters to his children.

Doctors dismissed his symptoms. Doctors labeled Paul with a somatization diagnosis, basically saying he wasn’t physically sick, just mentally. 

For years, every doctor Paul went to about his debilitating physical symptoms would see the somatization diagnosis on the front page of his medical record, and dismiss Paul’s symptoms as being in his head.

Then Paul developed a massive abscess next to his bowel and developed life threatening sepsis. The doctors couldn’t dismiss those facts. Paul received antibiotics for the sepsis and his other symptoms disappeared.

Yet when that treatment ended and Paul fell sick again, the somatization diagnosis preceded him to every doctor and once they saw that label, any of Paul’s physical symptoms were dismissed. 

But Paul did not give up. Eventually he found a couple of doctors - his ‘heroes’ - and he was finally and correctly - after 20+ years since the symptoms started - diagnosed with D-Lactic Acidosis, which is an over growth of bacteria in the gut, flooding Paul’s body with its neurotoxin.

Paul thinks many other people with other diagnosis like ME/CFS or somatization, may also have bacterial over growth in their guts.

Paul had to fight for years to get the harmful somatization label taken out his medical file. That label prevented Paul from receiving appropriate medical testing and treatment for years and Paul contends that the somatization diagnosis is in effect, a human rights violation.

SHOW NOTES

Fit, healthy and productive until...

0:06:45

Paul - very health child in Cheltenham (UK) - not into sport during school, but got into weight lifting as an adult - went to a very good school, good teachers

0:08:15

Studied art, European history, and sociology, A Level - later in his 30s did his degree in Fine Art, sculpture - but got an electronics job out of school - Foundation course important

0:10:45

After college started to have problems for the first time - different ways Paul could have developed chronic fatigue or ME (Myalgic Encephalomyelitis) leading to D-Lactic Acidosis because he re-built 3 houses and exposed to pesticides - when he got really ill in early 90s - sprayed his loft with pesticides and that's when he had problems from that point - started cleaing up the loft space - had been treated many time over the years

0:11:45

House built in 1840s so lots spraying - when Paul got a broom to sweep up dust and debris he immediately fell ill - also using NSAIDs (nonsteroidal anti-inflammatory drug) during this period - symptoms fatigue, muscle pain - abnormal fatigue after activity - NSAIDs affect mucosal lining of gut and healing of gut - inhibit different synthesis - taking NSAIDs during working, rebuilding house, and working out

0:13:55

Bit of workaholic - damaged both shoulders and collapse a disc - at this point encountered the pesticides - a number of things contributing to his illness - using NSAIDs to push through and mask the pain

0:15:15

Developed bowel perforation with sepsis with D-Lactic Acidosis symptoms: overgrowth of bacteria in the small intestine - sounds benign but isn't - Paul thinks there are many different types of bacterial overgrowth - like IBS - gut bacteria produce metabolites like D Lactic Acid - produces a neurotoxin D-Lactin would explain neurological symptoms in a lot of people

0:17:15

Paul had been diagnosed with chronic fatigue syndrome and ME, but he believes bacterial overgrowth may be affecting others with those diagnoses - Australian researchers found high level bacteria in ME patients

0:18:00

Fell really ill in 1999 - developed infection and D-Lactic symptoms at same time - hard to tell apart in early stages as D-Lactic feels like infection - flu like symptoms, abodominal pain, muscle weakness, breathing problems due lactic acid in blood - visual problems, confusion, speech problems, balance problems - symptoms can fluctuate - can disappear and don't know why

 

 

Entering Hell

 

0:20:15

Symptoms so bad "thought I'd entered Hell" - expecting to die or commit suicide to escape suffering - only reason Paul didn't was because of his children - but had written letters so his children would know why he had committed suicide

0:21:30

Before got really sick in '99, medical system mostly useless - Paul did have raised CK (creatine kinase) levels - but given somatization diagnosis by psychiatrist even though had raised ALT levels

0:22:30

Raised CK shows muscle or heart problems - raised ALT shows problem with liver - Paul believes that a somatization is a human rights issue because an unreasonable diagnosis because its based on any one experiencing multiple changing symptoms with a period of 2 years - they are basically saying "if they can't find it, you're the problem"

0:23:45

D-Lactic Acidosis causes multiple changing symptoms - but when give a somatization diagnosis, doctors don't have to search for other causes and patient conveniently swept under the rug - they tell you your brain is manufacturing the pain and the symptoms - Paul was shocked, upset, scared with that diagnosis because he was so sick

0:25:00

NSAIDs caused a massive abscess next to his bowel - damage to mucosal lining and his lower bowel perforated but not found until 2003, more than 3 years since sepsis - then difficult to treat, still infected in 2006

0:27:30

Paul noticed his symptoms would abate when he took antibiotics - this was a clue D-Lactic Acidosis was causing symptoms - but could be treated with same antibiotic (metronidazole) that helped with sepsis - Paul kept telling them from 2003 that he had some other kind of infection even after sepsis eradicated

0:27:45

Paul's doctor noted for emergency doctors that Paul was 'drunk not drunk' because this were D-Lactic symptoms and not somatizing - but 'somatization' label was in his health record and took to 2017 to get it removed - had to fight hospital continuously to get it corrected even after they found the abscess

0:29:05

People with multiple changing symptoms will get somatization diagnosis - a highly prejudicial diagnosis - this is where it becomes a human rights abuse

0:30:45 Psychiatrist (MD Allen J. Francis) has written a lot about misdiagnosis - he wrote "Mislabeling medical illlness as a psychological disorder" - he has blog that outlines harm from somatization

Brother's betrayal

0:31:30 Paul had a good doctor who said he wasn't somatizing but other doctors took the somatization label seriously - in the UK there is a document called Your Significant Medical History - the first document a doctor will see, highly influential and prejudicial - Paul steered clear of psychiatrists and was not sectioned

0:32:45 Paul was left in danger because of somatization label - he had a sepsis infection with periods of shock - but D-Lactic symptoms really serious with breathing issues, felt like Paul was suffocating at times - can have normal oxygen levels in your blood because D-Lactic affects mitochondria

0:34:15

Couldn't work - if Paul tried his energy levels would crash quickly - breathing problems, weakness, very ill - remembers trying to do things when he was ill, dizzy - Paul partially bought into the idea he must have psychological problems because that's what the doctors kept saying - so he kept pushing his body, making himself sicker - could end up in bed for weeks - had oxygen tank at home - but couldn't recover

0:37:30

Paul's brother is a doctor - he told everyone in their family that it was all in Paul's head and they all turned their backs on Paul - he was shocked how people treated him when he fell ill, even when he went asking for their help - people would just ignore him

0:38:45

But Paul did have a good doctor who believed Paul was physically sick and got him to see neurologists but they just said it was somatization - 2 of them noted that he had D-Lactic illness but did not comprehend - D-Lactic Acidosis is a hidden problem - normally associated with Short Bowel Syndrome

0:39:45

Dr Luke White gastroenterologist believes D-Lactic Acidosis is much more common then being diagnosed - Dr White believes that any one with bacterial over growth can develop D-Lactic Acidosis - Paul says a lot of people with ME/CFS have bacterial over growth - and still much research to be done

0:40:45

Paul eventually got a diagnosis from Dr Malcolm Hooper and Dr Sarah Myhill - but NHS (National Health Services) cut off Paul's benefits before Dr Myhill could order the tests - Paul considers both doctors to be his heroes - and wouldn't have made it without Dr Hooper - Paul positive response to antibiotics was the clue to D-Lactic - when his GP retired he left Paul a big supply of antibiotics to treat himself - and Paul realized he was on his own and started to investigate

Expecting to die

0:42:45

By 2016 Paul was expecting to die as he was developing reistance to the antibiotics - very worried so looked further - found D-Lactic Acidosis by chance after a conversation with Professor Hooper about fermented gut - when natural gut bacteria build up in small intestine they cause production of D-Lactic and imbalance occurs

0:43:30

Antibiotics failing, Paul had written his will - but in his research he found a list of symptoms for D-Lactic Acidosis and knew immediately that is what he had and made an appointment with a D-Lactic specialist - Paul took his records and symptom list and his positive response to anitbiotics

0:45:00

Specialist quickly diagnosed Paul and said it may have been the cause of his symptoms for the last 20 years - Paul was given a diet that restricted consumption of carbs and sugars thereby decreasing production of D-Lactic neurotoxin - so can control symptoms without antibiotics

0:47:15

A number of auto immune illness patients also do well on low carb / sugar diets - Paul says D-Lactic can damage the gut causing auto immune problems - Paul says D-Lactic is an infection, but doesn't raise your temperature because they don't get into the blood stream like a normal infection - but the metabolites do exit the gut and cause symptoms - but small quantities will damage mucosal lining and cause an immune response - bacterial overgrowth may be causing a lot of problems

0:48:00

Antibiotics can select for certain types of bacterial over growth - they can also cause over growth through resistance - treating live stock in our food system with antibiotics can also 'train' bacteria to be resistant - high carbs + antibiotics + NSAIDs maybe contribute to bacterial over growth

0:49:30

Paul was able to use antibiotics until he became resistant - antibiotics are primitive way of dealing bacterial over growth - he's hoping to get a fecal transplant to completely reverse the condition - he's had some temporary success with probiotics, but it is complex and he needs help, but is not getting it from health system

0:51:00

Just E Coli has both helpful and unhelpful forms, so too do gut bacteria - but nobody explored and mapped gut biome - Paul has to do own research just to keep himself alive

 

 

Lucky to be alive

 

0:52:00

Paul believes D-Lactic Acidosis may have already caused some deaths since it is a multi systemic neruological illness - Paul is fighint the NHS and the Hospital - he's asked them to investigate but they don't want to - the local NHS is fighting Paul tooth and nail - and his brother / physician believes his doctor colleagues somatization label in spite of acknowledging they only get 10 minutes with a patient - the somatization label negatively impacts subsequent health care

0:53:45

In spite of abnormal blood results, 2 psychiatrists labeled somatization diagnosis - making life difficult and no doctor would take Paul seriously, even in emergency room - other doctors requested blood gas testing but it was ignored for years because of somatization label on front of his medical records

0:55:30

Paul was very 'lucky' to get a proper D-Lactic Acidosis diagnosis, very lucky to have met Professor Hooper - Paul believes others will also have been misdiagnosed - people with IBS and other bacterial growth as some Australian researchers have found

0:56:55

Getting D-Lactic Testing is 2 stages: first is testing for bacterial over growth from a gastroenterologist - symptoms would include bloating, burping, production of a lot gases, abdominal pain, and problems from food with carbs - Paul needs to keep his carb consumption low

0:58:45

2nd step far more difficult - Paul is one of few who has been diagnosed - so will have to be pushy with gastroenterologist for further testing for D-Lactate - possible through Dr Sarah Myhill - definitely worth the expense - and ask for D-Lactic gastrenterologist specialist

1:00:30

Fecal matter transplant is using 'poo' from a healthy super donor to put back into the ill person's body the healthy bacteria - Paul hopes to pursue it and has done some research and there are cases of reversal via FMT - Paul is getting further testing - and is pioneering his own diagnoses and treatment

1:02:30

Paul has had to transform himself from a sculptor to a medical researcher - Paul says a lot of other people also unwell so he's trying to get as much info out to others

1:03:25

Paul thinks there other forms of bacterial over growth beyond D-Lactic and its metabolites - that research needs to be done so others can get diagnosis and treatment

 

 

Research

 

Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome.

https://www.ncbi.nlm.nih.gov/pubmed/19567398Fecal

 

Microbiota Transplantation for Fibromyalgia: A Case Report and Review of the Literature

https://www.researchgate.net/publication/316564507_Fecal_Microbiota_Transplantation_for_Fibromyalgia_A_Case_Report_and_Review_of_the_LiteratureMislabeling

 

Medical Illness As Mental Disorder

https://www.psychologytoday.com/gb/blog/dsm5-in-distress/201301/bad-news-dsm-5-refuses-correct-somatic-symptom-disorder

 

_____________________

 

 

Scott Simpson - counsellor and podcast host

 

Remedies Counseling - Making Life Better