Misdiagnosed: Autoimmune Disease | Mental Illness | Adult Acne
- My symptoms and 6 journey with missdiagnosed mental illness and adult acne.
- List of prescibed medications for adult acne and mental illness.
- An account of the various doctors and treatments I underwent before being diagnosed with autoimmune diease.
- Medications that I have currently been prescribed by the Dermatologist that diagnosed me.
- Brain Wave Testing Results.
Adult Acne Symptoms
It has been six long years since I first felt the effects of my recently diagnosed, autoimmune disease. Until then, I put every symptom I had down to working crazy hours and living in 9 different countries in under 7 years.
Whilst living in Dubai, my skin went from being beautifully clear to small white bumps that formed gradually across my forehead that I assumed were due to the high levels of pollution and other environmental stressors that I experienced whilst living in Hong Kong a few months previously. However, within 8 months of living in this new climate, I began getting cysts around my mouth and itchy skin on my back and arms. I also had my first “Anxiety attack” or something like it, that lasted a few hours but I didn’t really know what it was at the time nor did it happen again for over 8 months.
My dermatologist in the UAE put it down to eating on-the-go, lack of water, environmental stressors and exhaustion and sent me away with a tube of Benzyl Peroxide (BP)and some diazepam. The BP made a difference initially but was not curing the root cause of the problem and the diazepam meant I was a little drugged most of the time which I did not like.
I have to say, that as bad as the perceived adult acne became, I didn’t allow it to affect how I felt about myself. I understand that it is difficult not to allow vanity issues to get the better of us but I had no time to care about what people thought of my skin and instead just became a wiz at make-up application. I also understood that if I allowed this issue to get a hold of me emotionally, It would make everything look and feel worse. I genuinely viewed what was happening as a signal from my body that some deeper issue was at play, especially as around this time I started to study and read as many medical research papers on the matter as I could.
Personally, I thought it was hormonal acne for a long time; the women in my family had all suffered from Endometriosis, and other fertility issues including early menopause and early hysterectomies, therefore I assumed that paying for fertility tests would result in finding the underlying issue and as a result of treatment, would restore my skin.
Unfortunately, my results came back within the ‘normal’ range, however, as my Italian dermatologist pointed out a few days ago, if a doctor has not taken blood work of any kind when the patient is ‘healthy’, then they are unable to determine what is ‘normal’ for the patient and deems them irrelevant unless looking for a specific disease.
Recently on my water fast blog, I posted a more in-depth account into how they analyse our blood tests and why our bodies could be displaying an issue whilst our blood work still comes back ‘normal’ which you can read here. I feel this is important to understand before we continue, as it leads to my misdiagnosis and hope to save you from the years I had.
It is my personal opinion, originating from the United Kingdom, that it is all well and good having a free NHS health cares system (paid via our taxes), but if it is a bad health care system then it isn’t doing anyone any good. Genuinely, how much time would it take for a doctor or GP to tell us that antibiotics kill all bacteria and not just the bad bacteria that causes the issue so that we know to fuel our bodies with the right foods or get a probiotic? Not doing so, guarantees a repetitive need for more antibiotics and is such a waste of tax payers money, least of all, it makes patients more immune to antibiotics which is dangerous long-term for society as a whole!
After spending a ridiculous amount of money going private, I returned home for a short vacation and decided to go to my own Doctor about this who diagnosed me with adult acne which caused me to spend the next 9 months on different antibiotics, including various topical treatments, that never worked. He then sent me to the NHS dermatologist who took a look at my skin under the lamp for less than 30 seconds and diagnosed me with acne vulgaris and insisted on putting me on antibiotics that I had already tried because he had to follow the NHS protocol. My mother and I even stated how utterly ridiculous that was and a waste of money given that my doctor had already prescribed me them at the start of this diagnosis and they proved to be useless.
Prescibed Drugs For Adult Acne:
The following drugs were prescribed to me over a 3 year period:
- Lymecycline (antibiotic)
- Minocycline (antibiotic)
- Erythromycin (antibiotic)
- Doxycycline (antibiotic)
- Isotretinoin (antibiotic)
- Benzoyl Peroxide (topical gel)
- Tretinoin (topical Retina cream)
- Adapalene (topical Retina in Gel form)
- Co-cyprindiol (Contraceptive Pill For Acne)
Limecycline cleared my acne for 13 days including any hyperpigmentation but then the alleged acne came back with a vengeance. The contraceptive pill – Co-cyprindiol, made me vomit and when I wasn’t throwing up I would feel extremely nauseous so I stopped taking it after two days. Benzoyl Peroxide again was the most effective which I ended up buying from Acne.org however like most topical treatments, when I missed one day of putting it on my skin, that by this point was dry, red and swollen, the cysts would return.
Skin Care That Works For Acne Topically:
Other Topical Treatments and Products That Worked When Used Repeatedly:
- Sunday Reily UFO (cleared my skin within a week but caused slight ageing)
- Sunday Reily Good Genes (Brilliant when mixed with my foundation)
- Thyme Oil (mix 4 drops Thyme Oil with 3 drops Jojoba Oil and apply topically or on the soles of your feet)
Mental Illness: Anxiety, Depression and Related Symptoms Including Prescriptions:
I went on a summer vacation around the South of France and Sardinia with my family a few years back and whilst sitting at dinner after eating a dish that had an enormous amount of garlic in it, I felt a rush of adrenaline followed by extreme nausea. I had to immediately leave the table and run, in heels – yes in heels, all the way back to the hotel where I proceeded to throw up all night. My family and I put it down to the meal and a bad case of food poisoning, however, the following night as soon as it went dark, I became extremely emotional, frightened by people – which is crazy for me because I had made a career out of being social – and shaking like a nervous wreck. This, unfortunately, got worse every night, to the point where I was unable to sleep alone in my hotel room. However, during the day, it was like nothing had ever happened so I began eating what I could during the day, knowing that I would have to avoid restaurants at night. Understanding that a pattern of sorts was forming and these symptoms coincided with eating out at night or in public, allowed me to go out for a walk but not sit anywhere that was filled with a lot of people or near food, otherwise the shaking, adrenaline surge which felt a bit like a morphine shot, proceeded by vomiting all night until I was so exhausted that I would fall asleep, would begin again.
Upon returning to the UK, I immediately went to the doctor who put it down to exhaustion given that this was the first holiday I had gone on in years where I was able to sleep and have a lie in, without flying here there and everywhere. So I took his advice and slept as much as I could, which made sense to me given how I had been living, and the doctor had also pointed out that my body was merely trying to burn off excess adrenaline.
Sadly, whatever was happening only became worse as time went on and eventually I had to leave my job and remain in the UK with my parents. I was unable to shower, bathe, or sleep alone and remained in my bedroom for just under 2 years. During this time, the doctor had no choice but to diagnose me with a severe anxiety disorder or as he put it, “an old fashioned nervous breakdown” in which I was prescribed 150mg Sertraline (Anti-depressant), 150mg of Beta Blockers (they calm your heart rate). I would like to note that at first I was prescribed 50mgs of Sertraline but within 2 weeks I was on 150mg. Nothing really changed symptom wise for the first 4 months, other than the fact that I visually looked drugged out of my face and felt everything was in slow motion. I also felt the adrenaline sort of hit me as it would before any attack but it was like my body was not able to respond, so I would lay there staring into space feeling the full effects but unable to respond. Living hell.
I visited the doctor several times and got a few second opinions who all diagnosed me with the same issue within 10 minutes and told me that they would deal with my skin once I had my anxiety under control. After 1 year of taking sertraline and maintaining a resting heartbeat of 90bps I decided on my own accord to come off of the tablets; the beta blockers couldn’t be increased any higher and quite frankly, were not working and further to this, my parents had recently called an ambulance because they genuinely thought I was having a heart attack. I had always maintained, even whilst I had my head in a toilet, screaming crying because my brain was telling me that I was dying, that if I was rational enough to say ‘But I know I am not in danger, so why is my body doing this?‘ then for me, it wasn’t a mental illness as it apparently lowers the ability for logic. Soon after, depression hit me, which I put down to mourning my old life where I could go out with friends, or eat out at night without even a second thought. Thankfully, the depression, which felt like my emotions where physically dropping from my brain to my heart region, would never last long.
As a result of this diagnosis, my family and I decided we needed a change of scenery and food for the soul as I called it, with warm, seasonal weather as I was living in Scotland where it rained almost daily. Within two months of that decision, we were living in Florence Italy and for the first few months, I didn’t have any depression, anxiety, sickness or even a fear of eating out at night.
In fact, I genuinely thought that the good weather and change of environment, along with two years of bed rest had restored my body and mind. I had also begun meditating daily and became more serious about mindful living that I had taken up two years prior, which helped me immensely, especially as over-thinking and or negative thinking can be a hard symptom to shift when dealing with a mental disorder.
However, by Summer, the symptoms started to come back, and by Christmas, it was horrendous which caused an issue in my relationship, who I have to state, was an enormous help during the worst of times. Can you really say you are loved by someone if they haven’t seen you scream, cry and be sick all at the same time?
I eventually went to my doctor here in Italy who accepted my plea for allergy testing, fertility and thyroid checks as I had lost over a stone and a half which is around 9.5kgs within two months and was unable to gain weight. In fact, he began monitoring my weight and over Christmas, even though I had eaten a lot (love my food), I had lost 2 pounds which is crazy snd so I now weighed 45kgs which was less than I did at 17 and I am 5’6. However, he said that the weight will eventually come back on, especially if I am eating well which I was, and I wasn’t to worry about it because, with the amount of adrenaline going through my body, it was no surprise.
The blood tests came back within the normal range, as did my fertility checks at a private hospital, however, I had slightly higher levels of melatonin but nothing to be concerned about.
Doctors in Italy as in, regular General Practitioners (GPs) are unable to prescribe any SSRIs (anti-depressants) over 50mg, only psychiatrists can which is superb – every doctor stays within their field of expertise when it comes to prescribing medication in Italy.
Psychiatric Therapy & Treatment:
I decided to try EMDR therapy because I did not want to be on any more anti-depressants, which was superb as I hadn’t realised how abnormal my life experiences were nor how the smallest of events can affect our mental health, however, it did not stop the anxiety attacks or depression or then diagnosed, Post Traumatic Stress Disorder by this EMDR specialist. I also went to a private psychiatrist who saw me for 15 mins at a cost of 250 Euros, who prescribed me Celexa which was specifically for Anxiety, however I had to stop taking it after a week as it caused me to have even worse Anxiety to the point where I couldn’t eat during the day nor leave my bedroom entirely. I then got it into my head that in order to stop the vomiting from happening all night which was exhausting, sticking to clear drinks (mainly water) and plain food would possibly help however I noticed that controlling my food had to stop as it was bordering on an eating disorder and that is a slippery slope, so I quickly stopped that!
The final psychiatrist I went to was an American doctor and she prescribed me with 100mg of Zoloft which they say is just the brand name for Sertraline but I felt there was a huge difference; Sertraline didn’t stop anything it just allowed me to function and be unable to respond to the symptoms, whereas Zoloft after a few months, allowed me to live a life as if nothing happened.
Folliculitis | Scarring | Circulatory Issues
However, after a few months on Zoloft, I noticed that I was starting to get a lot of ingrown hairs after shaving or waxing, and my legs and feet where constantly purple. My hands were also sweaty all the time as was the rest of my body for that matter. I decided to take the natural approach and do a 3-day water fast as I noticed that my periods over the past few years were also getting worse; sickness, diarrhoea, grey in the face, extreme tiredness and a lot of pain on the first day. They also lasted for around 10 days which was ridiculous and unusual for me but I assumed it was due to that horrific contraceptive pill I had to take years prior.
You can read all about the incredible experience I had on a water fast here which I now do seasonally; my periods are completely normal and painless which is actually how they are supposed to be (contrary to popular belief they are NOT supposed to feel like you are growing a new uterus), it killed off the cysts and I had an incredible amount of energy. My legs also returned to their normal colour and I have started to use Sardinian Red Clay topically once a month to help with redness and circulation that works very well.
Annoyingly, I noticed that my skin was not healing, for example, I would scratch my leg and I would have purple scratch marks for months, and for all the cysts had gone, I started getting hard nodules that had the same appearance as acne, all along my jawline and all over my legs that were occasionally itchy too. I stopped shaving for a month or so as I read that Zoloft can cause folliculitis, but it only got worse and eventually, it was all over my legs, the top of my back, my jawline and now spreading to my arms and chest. I was also itching like mad but the Thyme Oil definitely stopped it from becoming horrific and helped with the open sores.
Dermatologist Consultation In Italy:
A few days ago, I was doing my nails and accidentally cut my toenail but it was nothing more than a minor cut at the cuticle, however upon further inspection, I noticed that my actual toenail had lifted and within 24 hours, it became swollen and infected to the point where I felt quite sick, extremely tired and my family where worried about the possibility of it becoming septic. After bathing my foot in the salted warm water for hours at a time and getting a topical antibiotic, it began to slowly heal but I felt a doctors visit was in order just in case. Given that I was covered in sores and had some sort of folliculitis all over my body, I searched online for the best dermatologist in Florence; that is literally what I typed into google and found Professor Lotti whose practice was conveniently around the corner from my house.
I have to say that his bedside manner, as well as his experience, warranted the hefty price tag for the appointment, however he is literally the best Dermtaologist in Europe and given the certificates on the wall, I am in no doubt that he may well be one of the best in the world.
We sat down and he asked me to list all the issues I had and just to be clear, the following are over the past 6 years:
- Painful menstrual cycle.
- Fatigue – I could sleep for 16 hours and still need a nap once had been awake for more than 4 hours.
- Severe anxiety and then random bursts of depression.
- Adult Acne.
- Folliculitis type reaction all over my legs.
- Would heal very slowly eg. a gentle scratch would turn purple and remain on the body for months. Other wounds would scar immediately.
- Loss of memory – can’t remember most of my childhood, couldn’t tell you the names of everyone in my small classes from school, could read a book or watch a series and literally forget the cast names or the majority of the storyline. Couldn’t really remember what I had eaten throughout the day sometimes.
- Food poisoning a few times a month.
- Nails wouldn’t grow without splitting despite treatments.
- Cases of flu and colds that would put me in hospital but doctors couldn’t find any serious health issue; even subjected to lumbar punctures and the worst I had was scarlet fever.
- Painful heart (or what felt like a painful heart).
- Not very emotional overall but sometimes I would be crying a lot over small things.
- Shakey hands – can’t put a coffee cup on a table without spilling it.
- Bad circulation in feet, legs and hands – however I had had this since I was a child but it got worse within the past 6 years – thankfully the water fast I did sorted that right out.
- Unexplained weight loss, however, I did cut out sugar for a while but then I was never able to put weight on despite eating; at Christmas, I lost 2 pounds – not normal.
- Bloody nose in the morning.
- Went through a short phase of coughing up blood but they found no blood in my stomach and doctors shrugged their shoulders as to what it was.
Autoimmune Disease Diagnosis:
Immediately the Professor stated that I did not have adult acne and it would be very rare, however common it seems online, to go from having clear skin even throughout puberty, to full-on acne the way I had it, even though adult acne is a real diagnosis, given my other symptoms, especially with Anxiety and Depression, it was clear to him that I had been suffering unnecessarily and had been misdiagnosed.
Autoimmune disease was the cause and he spent the next few hours proving it; For all the NHS dermatologists and private dermatologists throughout the world I had been to, not one of them looked at my skin using the device he used, a sort of camera/microscope where he showed me some of the leasions and alleged ‘acne’ on my face and legs. Up close it looked like red circular shaped scarring with a yellow or red nut shaped wound that was hardened. Not acne at all!
I was then put into another room where a neuroscientist attached sticky pads to my head – like an ECG for the heart – and I listened to various types of music and a guided meditation. Roughly 45 minutes later and much discussion over my research and this website, he offered to send me his own published research on the matter and sent me the copy of my brain waves which I cannot attach to this blog because it is in PDF format- however, as many of you will not fully understand what you are looking at anyway or what it really means (myself included), in short, my brain is not communicating effectively with the rest of my body, to the point where my muscles would never relax and the pores on the palms of my hands weren’t contracting.
Brain Wave Test Results:
- EMG – The peak at first minute of recording is volunteer muscles activity (required by the doctor). During the recording time between 2nd and 6th minute (relaxing time) the subject is moderately relaxed (mean value 10 μV, max 44,6 μV, min 5,3 μV). The curve is jagged.
- GSR-T – (tonic value, blue curve): the curve is jagged; nevertheless, it shows a positive trend. Values are low, but they increase quite rapidly (mean value 341 kOhm, max 484 kOhm, min 191 kOhm). The last part of the curve – when the subject opens her eyes – shows a high step that brings back skin resistance to the low value of 244 kOhm.
- GSR-F – (phasic value, red curve): it is always active, even when the subject should be relaxed. During the recording time between 2nd and 6th minute (relaxing time), the activity is moderate (mean value 24 μV, peak 95 μV). The last part of the curve – when the subject opens her eyes – shows e high phasic activity (mean value 44 μV, peak 163 μV). This values suggest that the subject has a moderately high mind-body alert perceptionCONCLUSIONSThe test suggests that in this moment there are clues of a correlation between the biophysical/psycho-emotional misbalance – moderately high mind-body alert perception – and the protraction of biochemical condition, which leads to the removal of the physiologic parameters from the body homeostasis.
- Data are recorded while the subject is resting and relaxing (base-line)
This, of course, explains why I was so exhausted, and given the bacteria in my brain from my gut after having so many antibiotics in my life, which, as I have always stated, even if you have had only one, prescribed course of antibiotics in your lifetime, you need to replace the microbiome because antibiotics kill off both good and bad bacteria in the gut and as we are not eating as well as we did 50 years ago in terms of, farm to plate and now they are spraying our food with goodness knows what, we are not replacing the good gut bacteria we need, therefore we need to take a Probiotic with at least 50 billion forms of bacteria.
Autoimmune Disease Medication:
The following medication has been prescribed to me that I will take daily for one month and then be reassessed, my brain will also be re-tested on a monthly basis too:
- Isotretinoin 10mg – Yes, I am aware that this is Roaccutane prescribed for severe acne, however I am taking it because of the powerful anti-bacterial agents and for possible genetic DNA issues that I was also tested for.
- Methylprednisolone 16mg – this is a corticosteroid medication used to suppress the immune system and decrease inflammation. The dosage also decreases over 5 days.
- Beta-Endorphin 20 drops – this is an endogenous opioid neuropeptide and peptide hormone that is produced in certain neurons within the central nervous system and peripheral nervous system. In laymen terms, it balances me out.
- Enterosgel 1 hour before and 1 hour after every meal – This is literally a thick gel that is taken orally and an organosilicon compound (it certainly tastes like it). It absorbs bacterial toxins in the body such as Clostridium difficiles, E.coli and cholera. It is not absorbed nor metabolized by the body.
- Silver Nitrate – This was made up by the pharmacist and came in a large brown bottle which I apply every night whilst wearing gloves to my entire body and do not wash off.
- Zoloft 100mg – This is so I am not suffering from the Isotretinoin side effects just during treatment and actually, the only drug that ever allowed me to walk out the door when I thought I had anxiety.
- Medical Marijuana (Normal Weed without the THC)
- I must drink a minimum of 2.5litres of mineral water daily.
Asides from all of this, I cannot use any other products both externally and internally other than my approved shampoo and natural body wash for the important parts. So far, I have been on the above medications for two days and the only side effects I am having is what can only be described as growing pains in my arms and legs and of course, I still have chronic fatigue and slight memory loss.
I will keep you posted on this journey so please share and subscribe to be updated – this will also help others who have possibly misdiagnosed. Quite frankly I feel this has been an example of medical negligence to poison my body this way when it would be so easy for a doctor to prescribe or suggest a probiotic after taking an antibiotic or medicine. I am genuinely infuriated that it took 6 years and if it wasn’t for my research and my belief that I was NOT a hypercondriac despite being treated as such in the UK, as well as every single symptom treated as a side effect of mental illness out of sheer laziness, then my new doctor stated that I wouldn’t have been able to conceive and symptoms would have become progressively worse as time went on.
I had to leave my career, I lost years of my life due to being misdiagnosed and It has been a very emotional time but after 9 months of treatment, the doctor believes I shall be cured.
Sending you all good health,