The expense of Lyme Disease


Lyme disease doesn’t just hijack your body, your immune system, it hijacks your bank account, that’s if you fear for your life.  Which you are bound to once you have been given the diagnosis that you have active borrelia burgdorferi.

Then there’s the added frustration of everyone, family, friends, work colleague’s assuming you are ok, because you look fine with your make up on, and I wouldn’t go out without mine so I tended to look ok.

 I remember taking my child to Drayton Manor theme park last year, and she wanted me to go on a ride with her.  To the normal eye the high ride, looked great fun, “come on Steph don’t be a spoilsport” my friends merrily teased let’s go on this with the kids”.  Looking at the ride that climbed up the tracks slowly then swung into a sharp right angle sweep I imagined my already stiff neck being jolted and jarred.

 I already felt I was living with whip lash!  Moving my head slowly I could feel a sensation of congealed fur around my bones, as they cracked with every solitary movement.  How I longed for the feeling I had before I had Lyme disease, when my neck wasn’t stiff and did not crack.

My friends, not even my family for that matter! Were aware I got up at six a.m. each morning to perform an hours’ worth of yoga stretches to try and prevent any further muscle damage, that this disease was doing to my once healthy body.  Every day without fail it was part of my routine, for since I had discovered in July 2016 that I had Lyme disease, having lived ignorantly to, since 2014 after being bit by that little tick, my joints had became so painful, inflamed, and stiff around my neck, shoulders and jaw.

Then i had to spend an extra half an hour each morning preparing my tablets for the day, as well as my fruit and greens for my smoothies because i knew my body needed the nutrients that it had became so depleted of causing me constant fatigue. So all in all an extra hour and half was spent each morning preparing my body to fight the Lyme disease, i missed the days of just bouncing out of bed and getting ready for work. Lyme was taking over my life in more ways then one.

Severe Tmj plagued me each night in bed I don’t say this flippantly it is a living hell it makes me so depressed.  Every morning I had to literally pop my mouth open like a balloon having a pin pricked to let the air in, my teeth had been clenching and rubbing all night long.  The splint I wore only helped to stop me causing further damage to my teeth, but I tended to bite on it so it was a catch twenty-two situation.  My sternocleidomastoid muscle in my neck was always swollen, like a large tube under my skin, but nobody noticed it only me.

 How many times did I have to explain to people I wasn’t well without sounding like a moaner.  Or made to feel that I was making excuses not to have fun on the ride.  At work, I had waves of nausea, but nobody knew, only me.  I had told my colleague’s when I first got diagnosed but because I carried on going to work as normal people just forgot.  I wasn’t sure if the nausea was from all the herbs I had started taking in September 2016 after my diagnosis, or if it was those damn parasites making me ill.  Silently I worried ‘was I getting worse?  Was the protocol working?  Was I wasting my money on tablets that might not even be doing anything? Nobody knew what I was worrying about – only me!  Nobody understood the avenues of worry this disease took me down.

There was no nhs doctor supporting me, because even though I had been bit by the tick, saw the dead blood engorged tick lying dead by the side of my bed on my carpet leaving me with the typical erythema rash on my feasted leg.  Even though I had started to become ill after that life changing moment, I was not even aware of Lyme disease so it was fourteen months later before I had researched my symptoms and realised I had Lyme, the doctors gave me antibiotics, but it is common knowledge that antibiotics have to be taken in the early stages and fourteen months later was too late.  My symptoms continued to get worse but the nhs labelled me with fibromyalgia, for some reason they would not accept I had Lyme disease even though their test indicated that my body was producing antibodies.

Feeling neglected and knowing all the time wasted with the nhs doctors was giving the parasites more time to furrow further into my damaged body, and pull me down to the point of no return I knew I had to have answers. I needed to know ‘were all the doctors right, I didn’t have Lyme disease?”  Or were my instincts right the tick that had bit me had infected me with its deadly parasites?  There was only one way to know I had to take constructive action. Nearly five hundred pounds later for tests for Lyme disease, and co infections relief washed through me as I prepared myself for a proper diagnosis. I sent my blood to Germany and the results came in, as I suspected, I had Lyme disease.

Once I had the results that was not the end of the expense and the struggle, not only the struggle of being ill, there was months of searching, panicking under pressure to find someone reputable who could help me, so much conflicting information to read, I was desperate for answers, I needed to find a reputable Lyme literate private practitioner.  Fortunately for me I found a very good lady she was part of the academy of nutritional medicine.  She lived down south of the uk too far for me to travel too, as a single working mother, so I chose a skype consultation with her, this cost me one hundred and ten pounds.  What choice did I have?  I needed professional guidance and the doctors were not helping me.  So, I paid the money and she devised a protocol of herbs and supplements.

I have been on the protocol for ten months now and it has cost me thousands of pounds.  I dare not look back at all the receipts to calculate the total spent because I am scared, not to mentioned frustrated that this has all been on my back at my own expense.  My optimized resveratrol Japanese knotweed capsules I have now managed to get a lot cheaper but they are still costing me £25 every ten days that’s a lot cheaper than I was originally buying them for, then there are all the other supplements such as magnesium and vitamin d, zeolite for the toxins, to name a few. Your body is totally depleted of nutrients once the Lyme parasite feeds on all the goodness inside of you.  I spent hundreds on immune system boosters that were prescribed for cancer patients, because I knew that my immune system was not functioning properly, the Armin laboratory tests measured my fighter cells response, CD57 levels, which were at a fifty and so I was told by my nutritionist this was very low.  I needed to boost this up to full potential to help bolster my fighter cells to become the army to beat these parasites that had hijacked my immune system. I go to the gym twice a week and do spinning not for weight loss but because i am desperate to sweat the toxins out of my body. Again people probably assume i am fit and healthy because i go to the gym, the truth is i know i am lucky that i can find the energy to exercise so i am fighting desperately to keep my body functioning well.

I was so paranoid about what was going on inside my boy I lived on bone broth for the first few months, it stunk my house out, and I must have stunk of garlic but I just wanted to get well.  When I look at photographs from a year ago I look so pasty and overweight, the way I am holding myself I can see how stiff I am.  I feel I look a lot better now, though inside I am still in pain with my joints and muscles, and unbearable, incurable Tmj i am hoping this is the aftermath, but i won’t know if its been killed off until i take the expensive private tests again.

I have now had to reduce my hours at work to three days a week.  My Lyme protocol tells me how damaging electromagnetic stress is and try and avoid it, the office I work in is wall to wall sockets, electricity and airwaves full of electromagnetic stress.  I think my employers would think I had lost the plot if I told them I cannot be subjected to electromagnetic stress they have probably not heard of it?  Then there’s my job which is very high pressure, and stressful all taking its toll on me and quite possibly a factor of my unrelenting tmj?

Finally, I have succumbed and reduced my hours in the hope that it will help to get me back to optimum health.  So not only am I losing money for reducing my hours at work, I am losing money on herbs supplements, chiropractic treatments, acupuncture, energy healing, health eating, tests and retests, it has cost me an absolute fortune, and still I do not have the security blanket of a nhs doctor guiding me, and telling me what to do next, and so the bank balance continues to deplete, just like my body has of any goodness.

  I look at my wage slip, and see my tax deduction, and it annoys me that I contribute to a national health service that has totally neglected me.

Ten months on I cannot continue to keep buying the necessary herbs and supplements that may or may not be killing off the Lyme disease.  I spoke to my nutritionist and she said it would be the right time to test.  The test has cost me approximately £378 I need to know if the protocol has worked.  If it has it means I can cut down on the herbs and supplements I have been purchasing, I don’t think I would ever feel safe to give them up now because I know the Lyme parasite can lie dormant, and I do not trust it.  It’s in my body and I just want it gone.

This morning I went up the doctors to get my blood pressure checked I have recently been suffering different symptoms, dizzy spells, blurred vision and pins and needles.  Again i am worried is this a sign i am getting worse, that the protocol hasn’t worked?  She checked my blood pressure and surprisingly it was fine.  I thought while I was there I would ask her if there is any way that it could be arranged for my blood to be drawn for a private blood test?

My Armin labs blood testing kit was at home and I can’t get a phlebotomist to draw my blood so that I can send it off to Germany to be tested.  The doctor said she couldn’t help because it was a private blood test.

Last year I had to spend £25 for a mobile phlebotomist to come to my home and draw my blood.  This year I phoned the phlebotomist and she was ready to have a baby and doesn’t provide the service anymore, nor could she recommend anyone else who could do it.  So again, I am stuck trying to sort my own health out, at my own expense, project managing my health with no help from anyone, and I worry about it, but nobody knows!

The way people with Lyme disease are left abandoned by the health service is unacceptable.  Who cares though?  Nobody knows!! Nobody cares.  I hope that i have killed the parasites off because if i haven’t i cant just say ” I am not spending any more money. Yes i can try and continue with yoga and healthy eating, but will that be enough without the herbs and supplements to keep the disease from spiralling out of control.  I fear ending in a wheel chair, or even dead.  Where is the help for people suffering from Lyme Disease?  Where is the support?  Nobody knows?  Nobody cares?


Introduction to my life. Untangled from the narcissists web & fighter of Lyme disease.

Hello there fellow humans.  I was having a little conversation with God a couple of months ago, one evening at about 3am, not in the same context as Neale Donald Walsch where i was getting a clear response (well i thought i was not at the time)…. and it all started a little something like this:-

That very day, the 25th of July 2016 i had had my results back from Armin labs Augsberg Germany from my blood test i had taken, for suspected Lyme Disease confirming i ‘had’ Lyme disease plus co infections.  I had been visiting doctors and specialists for the last two years, telling them i was convinced i had Lyme (I had actually been bit, had the rash and found the tick)… but i was fobbed off with the old cliche label of ‘fibromyalgia’ the doctors get of jail card, by way of telling a patient you now have a label for your symptoms so you can go away!  Fibromyalgia derives no real follow up treatment, unlike the hassle it would cause if they had labelled you with Lyme.

On the 18th July 2016 one week prior, i had sent my blood to Germany to be tested.  I am a single mom and not by any means wealthy but it was worth the fee of over £500 it had cost me to get these various tests done for Lyme and co-infections (as Lyme usually goes hand in hand with other infections).  I needed answers, my gut instinct was telling me there was something wrong, and i was not going to be fobbed off with the fibromyalgia label, and end up like some poor sufferers of Lyme incapable of going to work, with the potential of a life in a wheel chair.  This was my life and i was going to take control…if the results came back negative, then so be it, i would accept what the NHS had told me, and deal with my fibromyalgia the best way i could.

I suppose in a way i sort of trusted the NHS, they after all had had years of training and expertise.  My last g.p visit had been in May 2016, when i had requested blood tests’ again’ for ‘Lyme’ she retorted  ‘This has been put to bed, you have fibromyalgia'”. I stood my ground, looking at the doctor in disbelief, who did all but roll her eyes at me!

 Poor doctor was i such an inconvenience for her? sitting in her surgery, fearing that if there was a chance i had Lyme, that i could end up really poorly, worse than i was feeling now.  As we know its the sort of disease that gets worse over time with no treatment.   Was i wrong for worrying who would then look after my child?  Who would then pay my mortgage?  How would i cope with feeling ill day in day out…my health i had took for granted, was it on the verge of irretrievable repair? But how dare i think i know better than the doctor about my own body!  How dare i believe i had Lyme just because i had been bit and had the trademark rash and saw the tick dead on my floor engorged in my blood!  The look on her face almost sent me walking out the surgery with my head hanging for being a pest.  However – Was she going to be the one to look after me and my health and my child and my finances if it all went wrong? – no!  No she bloody well wasn’t so tough doctor i am going to have to insist.  So although made to feel like a neurotic nuisance i insisted on that test.  Which came back negative anyway… 

So on the 25th July when i finally had my results from Germany that were positive after the initial sense of relief, i went into a bit of a black hole.  Avidly searching on the Lyme uk discussion group on Facebook, looking for answers… what next?  You’d think i would go back up the doctors? but it was clear to me that i was up against a brick wall, armin labs had not been accredited and therefore it was likely the Nhs would foo foo me off again, with their next ‘get out of jail card’ ‘armin labs are not accredited’ so cannot consider your results that have cost you over £500 to get!  The task in hand was bigger then i had anticipated.  There were no clear cut answers.  This parasite was a clever little devil, it wasn’t as simple as popping antibiotics and hoping for the best.  What was i going to do?  Working so many hours was a hindrance, i needed time to research and find out what my next action was going to be.  I asked my work for some unpaid leave, i left work crying and scared and alone. My Dad couldn’t even help me now.

That evening i went to bed, i lay there in the dark, my mind going round and round in panic on what i was going to do next?   The darkness of the room engulfed me and i spoke out loud, this is so unfair i thought.  “God why have you let this happen to me?  Its so unfair, i have only recently got my life right, finally i am at the stage where i am supposed to being enjoying my life, there should be nothing to stop me now, no other human feeding off me now, thriving on my misery, instead you have replaced that parasite with a new kind of parasite.  I have suffered years of mental and physical abuse at the hands of a narcissist, seen the light, fought my hardest to break free, and now this!!! Why could you not give me a break Lord?  This should be my time, its so unfair”.

The ironic thing about it was i hadn’t been bit by a tick walking in the woods, or out camping in the countryside, and ‘no’ i ‘hadn’t been to Scotland’ as the last rheumatoid specialist had asked me when i had had positive blood tests back from the Nhs in September 2015, when she had told me they were highly likely a false positive because i had not been to Scotland.  No the little damn bugger had bit me at my home, in bed, in Staffordshire. Yes, Staffordshire, there aren’t just contaminated ticks in Scotland you know.  These trials and tribulations God wanted to bestow upon me, and i just couldn’t understand why?  

Three months on a lot has happened in my quest for answers and i feel like i am fighting the good fight.  I am hoping my blogs ( i intend to do) on dealing with domestic violence,breaking free of mental and physical abuse from a narcissistic partner, and my own Lyme story will be of interest to others fighting their own similar battles. I am a believer in positive mental attitude, and being your own best friend.  

Thank you for reading my blog.         obstacles

First blog post

I started this blog post as a little introduction as to what i am about, & what i intend to gain from blogging.  My life is finally at peace now, but for most of my adult life i had been in a controlling relationship where i was abused mentally and physically.  The last several years have been life changing for me since i have broke free.

The things we take for granted, the mundane tasks of going to work, coming home cooking tea and watching television leave me feeling so blessed.  Blessed to have a roof over my head, peace and quite and ‘no unnecessary drama’ created by another, and forcing my life off the rails like a runaway train.  I have wrote about what i went through in a book called ‘Under your influence’ which i am hoping to get published one day.

The first chapter is already feature on amazon, in ‘The writers and artists yearbook 2016 anthology’.  Ideally i hope others can relate to what i went through, and if they are going through it too, it may give them some support when they find it difficult to break free.  Sadly i have recently been diagnosed with ‘Lyme disease’ which is what my first blog is about.  After getting out of one sticky situation where i was in it up to my neck, i don’t intend to let this disease get the better of me.