Scott Simpson - Counselor for people living w Long COVID, MEcfs, vax injury, Lyme+...
Lily Kaiser Show Notes
Math Wiz
0:05:10
Lily grew up in the country side of Germany with her brothers and sisters - Lily did well in school, very good grades - she was a healthy child with the usual stomach bugs and occasional headache - she did have weak upper body strength so got a poor grade for fitness class - Lily tried to train her upper body, but it did not respond - ("Lily" is a pseudonym to protect her from more medical gaslighting)
0:08:10
Lily studied mathematics at university and she choose this major in part because of the film "A Beautiful Mind" - Lily always liked math and participated in math competitions - she found studying math at university to be very enjoyable - Lily is by nature curious and likes to explore - and math is about thinking, but she cannot do it any more due to illness
0:10:10
But Lily did not like school before university because she likes her freedom and to make decisions for herself - so she had disagreements and fights with her teachers who wanted her to obey - thinking was prohibited
0:11:25
Lily started to get sick during her PhD studies - she had a urinary infection that was treated with antibiotics and experienced gut pain, in retrospect she thinks it is neuropathic pain, especially when she is crashed with post exertional malaise (PEM) - but during that time she continued to have pain and stomach problems - about 4 or 5 years later she got ME (myalgic encephalomyelitis), but initially ignored it as she could still do her work and socializing
0:12:50
But this changed with an infection, and ME started mildly - Lily started to experience the symptom PEM and was too sick to be social on the weekends as she had to rest and conserve energy to make it through the work week - no parties, no dancing
0:14:10
Lily has been diagnosed with Small Fibre Neuropathy (SFN) and it may be implicated in her gut pain - she had multiple infections before ME developed, she just thought she had the common flu but she had other weird symptoms like cognitive and balance problems and felt exhausted - she continued working out but this may have been a big mistake - she was doing high performance training about 14 hours a week before she got sick
0:16:10
Lily had a passion for lifting weights and doing aerobic training but with her symptoms she cut back to 7 hours a week - but it felt like the infection never went away and she was on sick leave for 5 weeks and took 1 week vacation but did not feel better - Lily did not want to miss work and forced herself to return - soon she realized she was not well enough for full time and reduced her hours
Being gaslighted
0:17:50
But while she cut her work hours, she resumed her 14 hours of physical training - at this point Lily is convinced her problem is not physical, her problem is that she is stressed and that if she did the things she loved, her symptoms would resolve - that did not happen - but Lily was totally convinced that doing what she loved would fix her physical symptoms - her doctors reinforced that Lily's problems were psychological
0:20:10
After about a year, Lily started to question the psychological theory of why she was sick because in spite of doing exercise, she was getting worse - Lily wanted to return to work and secure her financial future - she asked her psychiatrist why she had not improved
0:22:10
Lily started to research her symptoms and when she read the Canadian Consensus Criteria (for ME) list she recognized her own experience and realized the psychological diagnosis was not correct - and this is when the trouble with all the doctors started - and if Lily wasn't the person she was, she could've ended up very depressed and suicidal
0:24:00
The psychiatrist did not agree Lily's symptoms were biological and switched her diagnosis from depression to somatoform disorder / psychosomatic - Lily got a copy of her medical file and read what the psychiatrist had written about her, including to her employer's insurer - the psychiatrist wrote that Lily had 'false illness beliefs', a psychosomatic condition and refuses to accept it is psychological - in reality it is the psychiatrist who has the false illness belief
0:26:55
At the same time, Lily also started to see other doctors and was lucky to get into the Charite (hospital) in Berlin and they specialize in CFS and do a lot of biological testing - but whenever tests came back normal, the psychiatrist would say that Lily must accept the psychological diagnosis - but Lily said they'd already tried to treat her symptoms as psych and it didn't work - they must find the problem in order for the correct solution - trying the same useless treatment is stupid
0:28:55
The psychiatrist did not believe Lily and wrote in her medical file that she will not accept the psych diagnosis - Lily was lucky to find a empathic GP so she didn't have to go to the psychiatrist any more - but Lily had continued working out to prove to the psychiatrist she wasn't depressed - but at this point Lily still did not know she had ME and that exercise was making her sicker
0:30:40
As soon as Lily got an ME diagnosis she learned about pacing her energy in order to not get sicker - but the ME diagnosis made her sad and grieve for the loss of her old life - and that she would have to start a new life
Rare pathogenic gene
0:32:25
Lily would've preferred having a depression or burnout diagnosis because the treatment for these were simple and she could carry on with her life - but with ME she had to accept facts and learn to live with restrictions - but Lily told her boyfriend that she felt like she was loosing part of her identity
0:36:00
The most difficult part has been the financial aspect and her inability to earn money - but she has lost from every aspect of her life: friends, hobbies are gone - and she's had and has huge problems with her family believing her - some don't believe she has a real disease and suggest she do yoga, or meditation, or see a spirit healer, or pray for god to help - god is punishing you because you don't believe in god
0:38:10
They are trying to explain it with easy solutions - but life is complex, and the solution will be complex - there is a point one has to accept that it requires a complex solution, and that is hard for most people
0:41:00
After being disillusioned by doctors, Lily started her own research and went for genetic testing via referral from her very supportive GP - Lily had whole exome, a subset of your genome, and known to be connected to genetic diseases
0:42:10
Lily told the geneticist about her 3 main symptoms that were most disabling - the genetic testing had rules to deterimine genetic diseases - but it is not like 23andMe, rather the geneticist looks at fundamental genetic variances
0:44:00
They did find a variant in Lily's genetics of 'pathogenic with unclear significance' - meaning this variant leads to disease in their modeling - next step is to try and find what illness is caused by the variant, to try to find the 'phenotype' - Lily was hopeful at first this would help her treat her symptoms, but there is research to be done
0:44:40
They also found the variant in one of Lily's parents and one of her siblings, and they both have some or most of the same symptoms as Lily - her parent was lucky they were in the US with good medical insurance at the time of illness and received good treatment - her sibling has the same set of symptoms, so they are mutual supports
0:46:10
It is a very rare genetic variant, less then 0.01 per cent - it is too early to say if the variant explains Lily's ME symptoms, or if a subset of people with ME have this variant - Lily questions if she actually has ME, although she fits the CCC 100%
0:47:30
Lily was reading lots of research papers about this protein encoded by her genetic variant - the receptor for the protein needs to be tested to determine if its dysfunctional - if so, it would change the function of the receptor - but its hard to find a lab to do the test and not available in Germany
Hopes spring eternal
0:48:40
Lily, when she's feeling better, will contact international labs she knows from research papers that know about this receptor and to perform a function test - Lily has not been feeling well the last week, her SFN is acting up with lots of neuropathic pain in legs and arms, her head and neck, and couldn't mover her arm
0:50:40
Lily wonders if her disease is progressing - her sister says she is getting worse - Lily is using Lyrica and gabapentine for pain - Lily and her sister are using lidocaine patches on their skin where the pain is strongest and don't have much side effects - used a lot for neuropathic pain - cortisone also helps, especially headaches - but if she has a migraine only vimax helps
0:52:10
Lily also takes immunoglobulin subcutaneously and this has cut down on her infections - and that is good because they worsen her ME - her quality of life has improved - but this year she's more sick then last year
0:55:10
Lily has to spend most of her time reclined in bed - despite this Lily considers herself lucky that she can more than many people with ME - Lily wants to find a lab to test the function of her genetic variant
0:57:10
On good days she's happy for what she can do, and on bad days she reminds herself there will be good days ahead - Lily hopes to return to work, to resume her hobbies, to hike in the mountains again - Lily has not given up.