Scott Simpson - Counselor for people living w Long COVID, MEcfs, vax injury, Lyme+...
Paul Smith 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
Bother'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
Medical Illness As Mental Disorder