My Health Story by: Mickie Stacey
My 'health'(or lack of) story started in 2005, when I was in my early 30's. Up until this point I had been healthy
apart from dying from Hepatitis in 1984 - yep, I died and had a very lucid NDE (near death experience) as well & an underactive thyroid in 2000 which was under control with medication. BTW, I recently found out that I had never had any form of hepatitis. I suspect Lyme as I had pulled off 2 ticks a few months before my 'hepatitis' incident. I've been bitten too many times to count. Growing up in rural SC, that was normal.
Before I start with my story, I will give you a break down of my many diagnosis as well as symptoms. Those seem to be the two most popular questions that I receive.
Diagnosis to explain my symptoms:
- Viral Labyrinthitis
- Migraine Associated Vertigo
- BPPV (Benign Paroxysmal Positional Vertigo)
- Multiple sclerosis (MS)
- CFS Chronic Fatigue Syndrome
- Vestibular Neuritis
- POTS (Postural orthostatic tachycardia syndrome)
These can vary in severity and frequency. I can have 1 or all at one time. No rhyme or reason. Some, I've not had in years.
- 24/7 dizziness since May 2008
- Sporadic vertigo (BPPV)
- Buzzing/Zapping in brain/head
- Numbness in face, arms
- Muscle twitching in arms, legs, eyelids
- POTS symptoms
- Heart palpitations
- Mood swings - crying, rage, anger, fearless, combatant, agressive
- Full body pains
- Random pains in fingers & toes - can be one finger/toe or all 20
- Eye floaters
- Smelling of cat urine when sweating (bacteria gives off ammonia as a defensive mechanism)
- Every gastro complaint known to man
- Painful periods that have lasted up to 19 days non-stop
- Thinning of hair
- Dry skin
- Dry/brittle nails
- Chronic fatigue not remedied by sleep or rest
- Craving certain foods
- Going off of certain foods (I HATE cucumbers and shrimp now)
- Blood sugar swings
- Unexplained weight fluctuations (I go up and down 60 pounds at a time)
- Crawling sensation on skin
- Worse during full moons (spirochetes come out to play/reproduce)
- High pitched humming sounds in ears
- Loss of words, concentration, short term memory loss
- Uterine fibroids
- Fibrocystic breasts
- Changing eye color
- Chest pains
- Excessive thirst
- Brain fog
- Heat sensitivity
- Air hunger
- Histamine Intolerance/Mast Cell issues
- Petechiae (blood spots under skin) - said to be from either Bartonella or Babesia (?)
My Other health issues/illnesses possibly caused by Lyme & Co.:
- Heart arrhythmia/palpitations
- Estrogen Dominance as well as low Estrogen to Progesterone ratios
- Low testosterone
- APS/Hughes syndrome
- Chronic Idiopathic Urticaria
- High cortisol
- Hiatus hernia
- Low ferritin
- Low Vitamin D (vitamin D is actually a hormone BTW)
- High CRP levels
- Insulin Resistance
- Uterine fibroids
- Fibrocystic breasts
- Histamine Intolerance
- BPPV (Benign paroxysmal positional vertigo)
- Keratosis pilaris (upper arms) - seems to have cleared up since I've gone wheat/gluten free
- Petechiae (blood spots under skin)
Coinfections that came along with my tick(s):
- Rocky Mountain Spotted Fever (Bacterial)
- Dengue Fever (Viral)
- West Nile (Viral)
- Japanese Encephalitis (Viral)
- Tick Borne Encephalitis (Viral)
- Q-Fever (Bacterial)
- Saint Louis Encephalitis (Viral)
They didn't test me for:
- Protomyxzoa Rheumatica
Below are excerpts from my diary. If I had copied the entire thing, it would take months to read and to be honest, I don't feel 'that' comfortable in sharing EVERY detail of my life. Not yet.
Christmas 2005 I came down with what the doctors thought to be pluerisy (despite clear scans), not once but twice! I spent all of Christmas and the New Year in bed, knocked out on antibiotics and very strong pain pills. Just 4 months earlier in August 2005, I pulled a tick off of my leg while at my grandmothers home in South Carolina. I had no rash, no fever, nothing.
By February/March 2006 I was feeling run down so my family and I decided to take a trip to Aviemore/Inverness/Isle of Skye Scotland for a weeks holiday, where I had another encounter with hundreds of tiny tiny ticks embedded in my wool socks. Again, I never had a rash or symptoms. We returned back to Buckinghamshire and normal life, work, school etc. resumed.
In June of 2006 things took a turn for the worse. I had been swimming, had a pizza and a shower, watched a movie and gone to bed. In the middle of the night I started to itch, uncontrollably. My eyes, nose, throat all closed. I couldn't breathe. I had suffered an anaphalytic reaction. I was rushed by ambulance to the hospital and given an injection of epinephrine. While waiting
to see the doctor, I had a second anaphalytic reaction. No blood was taken.
I was given steriods and sent home and given an NHS referral to see an allergist at my local hospital. The wait for the appointment was 60 weeks. Yes SIXTY weeks. I was scared. I was still suffereing with itching, hives and a choking sensation that no one could explain. I finally decided to see a private allergist on Harley Street in London. £3,000.00 later I was diagnosed with
Chronic idiopathic urticaria (CIU), which basically means chronic itching with no known cause. I tried every elimination diet available to no avail.
The choking was getting so bad that I could hardly eat soup without choking. My GP was still dishing out copious amounts of steroids & my weight was spiralling out of control, despite not being able to eat. At this point my thyroid basically bottomed out. I saw too many ENT's to count about the 'choking'sensation. My local ENT diagnosed me with 'Globus Hystericus' before the consultation. He was extremely rude and I was one of about 60 patients that he had to see that day. So, he spent all of 5 minutes talking to me. Globus Hystericus is defined as the sensation of a lump in the throat, as a symptom of anxiety or hysteria. I left in tears. No one knew what was happening to me and it seemed like they were trying the typical NHS response to EVERYTHING; anxiety!
Luckily, in 2007 I found an ENT that was actually prepared to do his job, unlike the NHS consultants aka 'insultants' that I had the misfortune of dealing with. I had a laryngoscopy,
barium swallow and a gastroscopy. After around 18 months of torture I was diagnosed with a hiatus hernia and given Lansoprazole (a proton pump inhibitor). My grandfather also had a
hiatus hernia but was given surgery to correct his (in South Carolina), but the NHS would rather throw some pills at you and give you hundreds of appointments than to give you surgery and rectify the issue, apparently to 'save money'. I cannot even begin to understand, yet alone explain their logic. It's bizarre to say the least.
By the end of 2007 the itching had subsided and thankfully the choking was a thing of the past. I thought I was OK. Nothing could have been further from the truth. On May 20, 2008 life as I knew it ended. I won't go into EVERY detail, but it was the hottest day that I can remember in the UK. I was driving back from IKEA and out of the clear blue had a stabbing pain in my head that blinded me for several minutes. Luckily I was able to pull over safely, where I sat for 15 minutes or so. I was seeing double, nauseous, tingling pins and needles sensation all over my face and severe dizziness/vertigo & photophobia. I called my husband and he managed to come and follow me home. How I made it home is nothing short of miraculous. I thought I'd had a heat stroke and decided to go to the hospital. I waited several hours to be told that it 'might be' a Bery's Aneursym and sent home. No scan, no consultation, nothing other than more pain pills and more steroids. I was TERRIFIED to say the least. For the next month I was completely bedridden in agony. I slept a lot and saw my GP several times a week. My husband would have to carry me to the shower and actually bathe & wash my hair. I was unable to walk, put a sentence together
or function as a normal human being anymore. After a month or so the stabbing pains had subsided thank GOD, so I was able to stop the pain pills. The dizziness however took center stage! I felt like I was on a boat in rough seas ALL THE TIME. Lying down eased it somewhat, sitting or standing was a thing of the past. I fell a lot, I screamed a lot, I prayed for God to kill me. Everyday.
By the end of 2008 my relationship with my GP was reaching meltdown. She was frustrated and condescending and I was hurt and angry at her attitude towards me. She started to block everything that I tried to do. Every question was met with 'eye rolling' and snarky comments. She was determined to blame my symptoms on 'stress'. I refused to accept her bogus diagnosis. Sure, I WAS stressed at everything that was happening, but before it happened I was over the moon happy! So, it made NO sense whatsoever. I did accept her referral to a psychologist, to prove her wrong, which I did. The report stated that I had no psychological issues and that my issues were purely physical. I was referred back to my GP after one visit. No further action required. That really pissed off my GP. We ended up SCREAMING at each other.
One GOOD thing did come out of that appointment. As luck would have it, I struck up a conversation with a lady that told me that her mother had endured the same experience and that she was under the care of a world famous Neuro-Otologist in Kent. She later sent me the details of a newspaper article written about him. In October 2008, determined to see this doctor, I wrote him a very long letter explaining my situation. My very supportive husband advised me not to get my hopes up too high, as I was dealing with an NHS doctor and they weren’t known to be very approachable, unless of course I had a referral, which had been rejected by my GP the day before. What did I have to lose? I prayed that night and went to bed. If it was meant to be, it WOULD be.
*** In September 2008 I saw a private doctor at a clinic in Hertfordshire that suspected Lyme disease. She wrote to my GP (I have a copy of the letter) asking my
GP to consider Lyme testing. My GP rolled her eyes at me and said, "If you had Lyme, you would have been very sick by now, if not dead. There is NO WAY you have Lyme." ***
I believed her.
In October 2008 I had some interesting blood tests come back. Apparently, I was suffering from malnourishment despite being 60 pounds overweight. GP dismissed it. As usual. None of my questions were answered.
In November 2008 I was contacted by his secretary (the doctor in Kent) asking me if I would be willing to take part in a documentary about him in exchange for the private consultation fees being waived. I tearfully agreed to meet with him two weeks later. I counted down the days that I would finally get to meet this doctor. This man was my only hope. My once cheerful, positive attitude and faith in humanity had been obliterated at the hands of the NHS. He was my light at the end of the tunnel.
The day of the appointment arrived. I nervously sat in the waiting room and chatted absentmindedly to the lady that was filming the documentary. Out of nowhere he appeared, shaking my hand and smiling the entire time. We discussed my symptoms for over an hour whilst being filmed. At the end of the consultation, he slid his chair towards mine and took my hands in his and said in his very calming voice, “It’s not all in your head, you are not crazy, you have MAV (migraine associated vertigo).” I burst into tears. Finally, someone believed that the excruciating pain, the twenty four hour dizziness, photophobia and stroke like symptoms were not a figment of my imagination. My medications were changed, I was given a list of foods to avoid and I left, feeling hope once again.
The medication took the edge off but I was still unable to drive, work or leave the house unattended. Simple tasks such as washing my hair, cooking, cleaning and shopping had to be undertaken by my daughter and husband. I continued to see the doctor in Kent every four months to monitor my progress. I began vestibular rehabilitation therapy and continued with the diet. A year passed slowly and I was no better, even after combinations of various migraine and anti-seizure
medications, fifteen in total.
Out of desperation, in 2009 I turned to the internet for answers or ideas on how to expedite the healing process. I craved some resemblance of my old life, some form of normalcy. I read medical journals, bought every migraine book known to man
and chatted with people all over the world that were plagued with this dreadful illness. I spent every waking moment, lying on the sofa with my laptop absorbing information. I attended every appointment with equipped with books, copies of
articles and lists of questions to ask. He (Dr.S) always encouraged me to be proactive with my health and healing. He was a breath of fresh air in comparison to my GP which I rarely saw after 2009, unless of course I had to have testing done at
the request of my neuro-otologist. My GP was infuriated that I bypassed her and self referred to see him, this was often reflected in her snide remarks and refusal to adhere to his requests, at the expense of my health.
After years of testing, MAV diet and different medications, he suggested that I have in depth hormonal testing as I had shown little improvement. This request fell on deaf ears, of course and I was forced to pay privately and in December of 2012 I received my test results. As suspected my hormones had all flat lined and I also had Hashimoto’s disease. (the day I asked my GP for hormone test she SCREAMED at me that she was NOT putting any further strain on NHS resources with this "voodoo medicine". Since when are hormones "voodoo" ??
Mid February 2013 I changed GP’s, after she refused to refer me to an Endocrinologist. My new GP read all of my letters and test results and immediately referred me, stating that my previous care was preposterous. I was relieved that I was finally getting some answers, or so I thought. I FINALLY saw the Endocrinologist. He was worse than useless but gave me T3 to try and told me to come back in September. He also told me that I needed to be on hormones and that he would write to my new GP. The T3 helped with the dizziness, but caused me to itch, so I stopped taking it, called the GP and explained the situation. I was PROMISED that I would be given BHRT (bio-identical hormones) to replace the depleted ones. Of course, that NEVER happened. I left that visit in tears. Let down once again.
Early April 2013 I was diagnosed with chronic Lyme disease (after paying for a private test via Igenex labs in the USA), an illness that the NHS and Public Health England (PHE) refuse to acknowledge exists in chronic form or treat. Back to square one. The NHS does NOT want to know! I recall being bitten while back home in South Carolina in 2005. I, like most people were misinformed about Lyme. I never had the rash or flu like symptoms, so I filled it away in the archives of my mind. Finally, after nearly five years of tiresome research (something that the so called professionals should have been doing) I finally know why I have been suffering needlessly and why my quality of
life and the life of my family has been substandard for so long, why we have suffered emotionally, spiritually and financially. I look back to 2008, it seems like ten thousand lifetimes ago. I assumed that I would be well in a year, at the most. That assumption could not have been further from reality. My fight for health, my fight for life, my fight with the NHS has just begun.
On May 28, 2013 I spoke to Dr S (my neuro-otologist in Kent) on the phone. He was astounded at the lack of 'action' by my GP, Endo, etc. He wrote to my GP to ask that I be referred to an infectious disease doctor (for the Lyme), and also a GYN to start me on Bio-identical hormones. He said that the hormonal imbalances & adrenal issues were feeding the Lyme! I suspected this all along!
Early June 2013 I had to pay to see a private doctor in London. He was good (but VERY expensive). He repeated a lot of my tests and basically, told me that Lyme had destroyed my hormones (thyroid, sex hormones) and my adrenal glands. I was on over 20 pills a day for adrenal fatigue and anemia & tons of herbal extracts called adaptogens. There were SO many side effects from the adrenal treatment. I did start to feel much better though.
July 26, 2013 - As suspected, my GP refused to respond to any of my requests (referral to GYN and Lyme Clinic). I continued to work on hormones, etc. Had a rough time. VERY rough.
I was unable to stand or walk for more than a few minutes without falling or blacking out. I also decided to do a DNA test to determine whether or not I have the MTHFR gene mutation - via www.23andme.com - the results took about 6 weeks to process. Mutations make treating Lyme VERY difficult.
August 2013 - I have a boat load of mutations. Which makes treating Lyme difficult....
- COMT V158M rs4680 AA +/+
- COMT H62H rs4633 TT +/+
- MAO-A R297R rs6323 TT +/+
- BHMT-02 rs567754 TT +/+
- BHMT-04 rs617219 CC +/+
- BHMT-08 rs651852 TT +/+
- VDR Bsm rs1544410 CT +/-
- VDR Taq rs731236 AG +/-
- MTHFR C677T rs1801133 AG +/-
- MTHFR A1298C rs1801131 GT +/-
- MTRR A66G rs1801394 AG +/-
- MTRR R415T rs2287780 CT +/-
- MTRR A664A rs1802059 AG +/-
- CBS A360A rs1801181 AG +/-
- SHMT1 C1420T rs1979277 AG +/-
September 2013- Saw Dr. P (the bio-identical hormone guru) on Harley Street. GP STILL refused to refer me, despite several letters from my neuro-otologist, Dr. S AND my ongoing female issues! So, I had to see him privately. The appointment was great! I walked out with a prescription for Estradot (Vivella for US readers) and Utrogestan (progesterone).
October 2013- One month into my BHRT (bio-identical hormone replacement therapy) and WOW. I felt better physically but emotionally I was in 'mega-bitch mode'. It's like I had no filter. I was also told by my hormone guy that he sees a lot of Lyme people in London! This is more prevalent than previously imagined. He also said that if your hormones are low, so is your immune system. Makes sense. I did experience a few body pains with the patches. Some sort of herx? Saw Dr. S (neuro-otologist) he was very happy that the hormonal issues sorted, but not happy at all with my GP's failure to refer me to an Infectious Disease doctor
or at the very least the Lyme Clinic in Hampshire. I started using an iMRS PEMF machine.
November 2013- GP referred me to the Lyme clinic in Hampshire, in October. No one told me. So, I rang Hampshire and they emailed me some papers to fill out and blood work to be done before my appointment in February 2014.
November 11th, 2013 I started Dr Cowdens Lyme Protocol. Herxed like MAD on 2 drops. I video taped all of my herxes, but after a discussion with my family, decided that those videos were way too personal and should not be uploaded. It wasn't a nice experience at all. Others have decided to upload their herx videos to YouTube if you're interested in what
could potentially happen when you treat Lyme.
December 2013 - Unreal pain in my arms and legs and tourette's like symptoms (!!!). Ended up in hospital (dehydration) and CRP levels at 153 and ketones HIGH (I'd lost 30 pounds). My fault for not drinking the 3 litres of water
that Dr Cowden told me to drink. These herbs are STRONG and will dehydrate you. Lesson learned! I drove for the first time in 5 years. Still not 100% right but much better. I missed driving!
Something WEIRD happened after starting Cowden, a layer of skin has came off the bottoms of my feet in complete foot sized pieces! It doesn't hurt at all, just weird!
January 2014- Lost nearly 51 pounds now, more energy. Less body pain and the neurological symptoms went from a constant 10 (24/7) to a 5, but varies. My thyroid was out of whack again, but my endo released me! Go figure. I also had my follow up with my hormone guy. He boosted me up another level, just when I was being 'nice' again!
Also added in Testosterone (Testim) and warned me not to 'like it too much'. I don't like it too much, I ADORE it.
February 2014 - Cowden is GREAT! Love it. Hormones GREAT. Was moody again after boosting up my hormones, but my energy levels were off the charts GOOD! So, It's working :) Testosterone should be mandatory!
Neuro junk was still up and down. Started MACA root, seemed to be balancing things nicely. I had my appointment with Dr. D at the Lyme Clinic. He says that Igenex isn't FDA approved etc and doesn't *think* that I have Lyme. Yeah, ok. If I didn't have Lyme then why did I have severe die off? Why were my CRP levels over the top high in treatment?
** I treated my Lyme and coinfections for 21 months on Cowden with great success**
March 4, 2014 - All of my blood tests from Porton Down (Biological Warefare facility/Lyme Clinic.... Go figure!) I tested positive for:
- Rocky Mountain Spotted Fever (Bacterial)
- Dengue Fever (Viral)
- West Nile (Viral)
- Japanese Encephalitis (Viral)
- Tick Borne Encephalitis (Viral)
- Q-Fever (Bacterial)
- Saint Louis Encephalitis (Viral)
- Cytomegalovirus (Viral)
- Epstein Barr (Viral)
God HELP me!
They didn't test me for - but I suspect these:
- Protomyxzoa Rheumatica
Apparently my results were 'fascinating' to everyone in the lab. I'm just a medical mystery I guess.
March 19, 2014 - Had a phone consult with the Lyme Clinic in Hampshire. I've been offered 8 weeks of Doxycycline and 8 weeks of Rifampicin. Tests will be repeated
and if I'm still positive them more abx till infection is eradicated, so they 'said'. More lies.
April 17, 2014 - Another EPIC fail on the part of the NHS. I woke up to 2 voicemail messages from the Lyme Clinic. One asking me to call them and another apologising for calling me Stacey. To make a long story short, they wanted to schedule an appointment for me to talk to Dr. D about my results. I had that appointment 3 weeks earlier! Then, after that (apologised to, put on hold etc) I was told that one of the 2 antibiotics prescribed might cause my urine to go red. I proceeded to tell the person that I wasn't on antibiotics because my GP hadn't received any instructions at all from them. Put on hold again. Apparently, instructions were sent to some GP that I've never even heard of at a different address! I said 'If I decide to take the antibiotics, I will need to reschedule my retesting from July to August so that I have time to complete the course.' Deadly silence.... Response: 'Umm, I am really sorry, but this clinic is closing down in May.'
They had only been open a few months, but apparently the UK government doesn't think Lyme is serious enough to provide further funding. I asked if I would be transferred to an infectious disease doctor. Apparently that's up to my GP. Great job as usual NHS!
*** I took the antibiotics - NOTHING ***
After April, 2014 I stopped keeping notes. I stopped fighting the NHS. I had come to the conclusion that no one on the NHS would help me. A lot was happening in my personal life. Birth of my first grandchild, university etc. I have gained all the weight back that I lost plus some, it yo-yo's - then lost it again. I found out that I was insulin resistant & I refused Metformin. There has to be a better way! You guessed it. Diet. Ketogenics is AMAZING.
The NHS are still being their usual 'charming' selves - ZERO help. Nothing. I am still seeing my Hormone doctor every 6 months and that is going well. I now suspect Bartonella and Protomyxzoa Rheumatica.
I've been successfully addressing parasites (all Lymies have them) as well as mold (mould in the UK) issues, addressing my diverticulitis! I did the Fat, Sick and Nearly Dead Juice fast - it works! I'm now on a Ketogenic diet and my insulin resistance is a thing of the past. Thank God! Every single person on my dads side of the family has type 2 diabetes. I am NOT going that route!
My dad died July 5th 2015 & I cut out A LOT of people. I cannot deal with drama and heal, it's counterproductive. My stress levels were off the charts. My neuro issues spiked AGAIN.
Since my dad passed away I have been spending a lot of time in my faith. I have been working through a lot of past traumas & negative emotions from my childhood (& suspected PTSD), which meant severing all ties with my 'mother'. It had to be done. When I first started this journey 2 years ago, I remember reading or watching a video where Dr. Cowden talks about releasing ALL negativity, forgiving those that have hurt you etc. Dr. Cowden is a Christian (like myself) but I thought it was sort of
wacky at the time. What on earth does past traumas, child abuse, unforgiveness, etc. have to do with my Lyme Disease?? A LOT. Honestly, a LOT ! I believe with all of my heart (now) that if you do not work it ALL out you will never recover. Emotions play a huge role in immunity or lack of.
I've also gained my naturopathic nutrition qualifications. I learned so much! Thank God I can read and write and have a mind to think for myself. I have taken a bit of time off from University for now. I will continue though (October 2016). My GP retired (he's not even close to 65) Maybe I drove him mad? My new one is beyond USELESS. Ugh.
The NHS have failed me for nearly 10 years, so I've just started doing things for myself. I have recently seen an Infectious Disease doctor at Oxford University. They did a lot of testing on me and still deny that I have Lyme, they do acknowledge all of the other infections and I also tested for Cytomegalovirus & Epstein Barr. I have also been referred to for a sleep study. They are currently going down the 'CFS' Chronic Fatigue Syndrome route. Honestly, I really don't care anymore what the NHS think. They can call my illness whatever they like. I KNOW what it is. I'm just 'playing the game'. I have also made more progress by taking matters into my own hands than anything they have ever done for me. So, I am done with the NHS. I will only use them for testing. I have learned enough about disease, nutrition, etc. that I feel confident in treating myself.
I get emails asking what I am currently doing. Well, it varies. Obviously, I am still on BHRT (Bioidentical Hormones) & will be for the rest of my life, some herbs, acupuncture, HBOT (Hyperbaric Oxygen Therapy), mega doses of liposomal vitamin C and energy medicine. We are all different, we all respond to treatments differently. What works for me won't necessarily work for you.
My Neuro-Otologist once used the beaker analogy with me. Basically, think of your body as the beaker. You start off empty. Every time you contract a pathogen fill up the beaker a little. Stress? Fill it up some more? Childhood issues? Add more. Parasites (common in tick borne infections)? Add more. Mercury fillings in teeth? Add more. Coinfections? More. Bad diet? More. You get the picture? My beaker was GUSHING!! Start reducing those 'triggers' and what happens? The beaker isn't as full. Remove more..... less full..... and less and less.
I am happy to say that my beaker is 95% empty. Hang in there! If I can do it..... ANYONE can.
I will keep this updated when I can, but for the next few months, I need to be STILL. I need to focus on the important things of this life. Please understand this. I refuse to allow this steal any more of my life. In the meantime I will continue to support my immune system. I am much better than I was, but still not 100%.