Sunday, 29 March 2015 19:48

Joanne's story: neglect and hope

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Up to July 2014 I'd never heard of Lyme disease and co-infections, my journey began in 1990 unknowingly. 

My name is Joanne Baskett, I have seen numerous Doctors and Consultants over the years with varying diagnoses. Earlier in 2014 I was referred to the neurologist at Swindon’s GW Hospital for tremors, numbness, tingling, burning, cognitive problems, neuropathy and numerous other symptoms.

Some of my most painful issues other than the neurological ones are predominantly right sided; the left is also affected but not as severely. Right sided unilateral sudden deafness, right sided shoulder inflammation rotary cuff muscle / joint, right foot inflammation / joint / bones, right eye sharp stabbing orbital pains, twitchy right eye for weeks long, sore tender facial twitches / tremors, sharp shooting pains / burning / weakness / heaviness both legs, right hip pain, both knees pain and creaking, heart palpitations, POTS symptoms, chest tightness and breathing issues some days, bi lateral hand issues had surgery on both, persistently low basal body temperatures always 34-35 degrees Celsius, persistently low blood pressure to name a few.

The last 6 months have been a crash course in self learning, being passed from pillar to post and doctor to doctor, which at times has proven to be very straining considering my memory problems, brain fog and cognitive issues.  After a battery of testing, most results were normal ranges, the consultant neurologist at the GW Hospital mentioned that she would test for Lyme disease on the 23rd July 2014, I asked what this was and I was told to Google it when I got home.

The bloods were drawn that very day, I came home and Googled it and to my absolute astonishment everything started clicking into place, it was like a Eureka moment!>In the 1990s I'd had two bullet rashes in the USA was very sick and confined to the hotel room, a week later whilst still away. I thought they were mosquito bites or insect bites.

Who am I to know? I am not a doctor and access to such information was not readily available like it is today.

I also got more bullet type rashes and an EM type rash during 2010 & 2013 but I didn't make the connection. During both those periods my cats both had engorged ticks which I removed with tweezers. The NHS Elisa test and CSF test came back seronegative in the meantime and I was written two letters, one from the above consultation dated 14th August 2014 and another dated 26th August 2014 stating I didn't have Lyme disease. 

I rang the department at my hospital and asked to speak to the consultant, she wasn't available. I asked what now and can I have a western blot test? I was told no there's absolutely no way you have Lyme disease and told it was ‘functional’ and given a website address to look at once home.I left a message for the neurologist to call me urgently so I could tell her about the bullet and Em type rashes.

I believe I am definitely infected with some type of bacterium, virus or pathogen that has messed up my immune system my symptoms are also migrating around my body and cyclical in nature, I have always felt this way intuitively since my ill health started in the 1990’s.

I know almost intuitively what my body needs, I need immunotherapy to fix and correct my messed up immune system.I was told in the 1990s that I had ME and ring worm/fungal infection. I had glandular fever – EBV and also diagnosed with fibromyalgia and chronic pain, I believe that these conditions are symptoms not a diagnosis. I rang up again to speak to the neurologist as she hadn't returned my call, I left yet another message.

I never got a call back I got discharged and she left the hospital, I have since asked my GP to re-refer me as per the neurology department request. I've enquired about co-infection testing and been told they don't test for co-infections and was refused point blank and told no Lyme as Elisa negative and CSF negative, they wouldn't even do a western blot! I'm pretty nutritionally deficient hardly managing eat most days, as I get sick a lot and never go outside, they won't test my vitamin levels in my blood my GP surgery drew bloods and asked for vitamin levels and specific vitamin d and specific vitamin D analysis, but once again I was refused this diagnostic test by the local hospital labs.

It is despicable how someone so chronically ill is left to rot and waste away, unfortunately this is common practice in a money driven world. Nothing is done to help improve our symptoms or provide extensive testing and research to obtain proper diagnosis and manage the symptoms e.g. testing vitamin levels.

The attitude towards Lyme disease, co-infections and chronic illness needs to change throughout the medical industry and profession, as information studies, research is now becoming readily available.There are some amazing pioneers working and striving to commission new and improved research campaigns, better diagnostics and better improved treatments, some of whom we are honoured to have here at the conference. The NHS fantastic at treating and managing acute illness but abysmal at treating and managing chronic illness”, simply listening to all these patient groups the suffering in the UK and globally is apparent from their real experiences.

A little more about me, I'm a 42 year old single parent with no help or family support. I'm bedridden most days over the last 4.5 years.>I'm unable to walk, eat and carry out basic functions alone, and totally reliant on agency carers.>I strongly believe I have had untreated and undiagnosed Chronic Lyme Disease & Co-infections for over 20 years.

I have had numerous mosquito bites in UK, Spain, France, Greece and the USA. I was first bitten by what I now believe to be a tick/s in the USA during 1990 and again during early 2000 at home in Wiltshire UK. My immune system is not getting better, I am still loosing this ongoing battle with my health, but fighting with every breath I breathe.>I am too sick to work since 2010 and have no family support and reliant on low state benefits, which on these I cannot afford proper testing or any form of proper treatment.

I also have to pay rent and pay towards my care all from my benefit. My future is bleak, confined to bed I have no life, I am existing not living, I have no social life what so ever. If it wasn't for my children I'd have given up they are truly my world. At the moment my life is futile I'm merely existing but not living. But I won't give in to give up hope :)

I am also fighting HPV carcinoma lesions/tumours multi site, since 2006 they keep recurring due to lack of an immune system and at other times an overactive immune system. The lesions / tumours keep growing back after being removed, had bowel, anus, perineum, cervix and partial vulvectomy. I have to use catheters to empty my bladder now, medication for my stomach and bowel due to lack of motility.

Courtesy of the NHS, undiagnosed disease and immune system problems, I received a premature 'gift' a letter on Christmas Eve telling me that: My 27th Surgery is scheduled for the 19th January and I'm being admitted to theatre at 9am at the GW Hospital Swindon, the very day of this majorly important event, this conference I am simply devastated I cannot be there. I feel something has attacked my joints in my feet and bones, but the cause is unexplained, I have not injured myself, the irony is the NHS breaks parts of me and cuts me. There is premature damage of the joints, I need bones breaking re-pinning and joints replacing, all unexplained arthritic changes not RA though or OA.

To date my many surgeries so far are muscular skeletal, nerve, bone or cancer surgeries so I've been and still am fighting cancer HPV induced and I believe undiagnosed untreated chronic Lyme disease and co-infections. My NHS ELISA test was negative so my GP & Neurologist have said I don't have Lyme and won't even do a western blot or other co-infection testing, I've been discharged from their care.>After my last surgery no. 27 on 19/01/15 to remove damaged joint & break bones the orthapaedic's at hospital said its arthritis not Osteo or rheumatoid but failed to send off the removed tissue for investigation!!!!

I then saw a Rheumatologist for the first time not the named one in my hospital letter but another abrupt part of the Rheumy team who ignored all my pics on my phone of whole body migrating joint swellings and intermittent Bell's palsy pics! She didn't examine me at all and laughed when I said about lyme saying it's not arthrits or lyme! but offered me another ELISA to which I refused explaining ELISAS don't work and I asked for a western blot instead and I was met with hostility and told no I can't have a western blot so now I've been refused this by the local hospitals neurologist and rheumatologist! She then discharged me on the spot! I came home and cried this was two weeks ago on the 18/03/15.

I'm being ignored despite having bullet rashes and a huge list of clinical symptoms that are indicative of Lyme disease and co infections.I decided to do some research, empower myself and speak to others in the same predicament as myself through various support groups, blogs and many recommended the book “Why Can’t I Get Better? Solving The Mystery of LYME & CHRONIC DISEASE” by Dr. Richard. Horowitz MD (worldwide expert).

I did the Dr. Richard Horowitz ‘MSIDS’ questionnaire in his book "why can't I get better" and scored a total of over 134 out of 159.

Amazingly I managed to engage Dr. Horowitz on his Facebook page for further information and an interpretation of what this score could possibly mean?, here is a copy of our conversation: won't print here but anyone interested to see message me :)

Our UK medical establishment and officials such as PHE & DHE need to realise that the testing is inadequate especially for early Lyme or late chronic Lyme. That Lyme & co-infections are becoming epidemic and are more common than the UK authorities are recognising and acknowledging many cases are still yet undiagnosed and untreated. Due to cystic and stealthy ways spirochetes hide, often producing a bio films and hiding within cells, the ELISA looks for antibodies in the blood which most of us that are still sick don't always show. It's as if our immune systems don’t see the Lyme disease and co-infections. Defunct dated testing methods too heavily relied upon coupled with the lack of clinical symptoms being used to make a diagnosis.

Our UK NHS, PHE and DHE need to understand the value of diagnosis on clinical symptoms and not relying on inadequate testing, clinical diagnoses are not practiced much any longer in the UK, it's as if the doctors have lost that skill. More knowledge needs to be filtered across the NHS on how chronic Lyme manifests and the issues for treating and testing i.e. neuro-lyme, cystic forms, spirochete behaviours, and bio-films.

Thus so far I am untreated and undiagnosed. I have no life apart from constant suffering, neurological problems, joint problems, major weakness and major severe constant fatigue, pain and multiple surgeries with no end in sight. Why not investigate and test me properly and treat me on clinical symptoms and give me immunotherapy? It is obvious to me that something is very wrong with my immune system. Patients are often not given enough credit with regard to knowing what is and isn’t right for them as individuals and often if a case isn’t text book it can be overlooked.

The end of last year had been spent by me thinking of ways to raise funds for nutritional supplements and for some basic herbal treatments via fund raising events and approaching friends for help, with a view to better manage my symptoms, as proper private treatment is way beyond my means.>I managed to set up a Go Fund Me Page to try to raise some funds for supplements to manage my symptoms and hopefully to raise enough to obtain proper testing and then some form of treatment. I have also created my own Facebook page to document my journey it is called ‘Lyme Actually A Personal Journey’ So far we have not had a great deal of success but I am hopeful that one day I will be able to get some proper form of treatment and get my life and that of my children’s back. My suffering and that of many others needs to stop, as does that of my children. 

My children? This is what Dr. Alan Macdonald wrote about them: "First born son Nov 1993 birth 5 months after the bites! born with unexplained congenital defects VSD, leaky aortic valve needing open heart surgeries, EM type rashes still active unknown aetiology and dermatologist unable to treat, cfs/me & scoliosis.

Only made the connection after seeing this film (see below this paragraph) in January 2015! It was mind blowing! Other two younger children 12 & 15 at potential risk i.e. passing down generations many study refs on separate sheet, transmission in uteri.

Parent – tick bite/other vector/s Lyme and co-infections = child ME, MS, ALS, Congenital."

I mean we've never ever had a family holiday together something most people experience in their lives and some of the most basic family things most people take for granted.>Thank you so much for taking the time and listening to my story. I have produced a three part document to accompany my short Film; PT 1 is My Story, PT 2 is the Issues & Questions to be raised and PT 3 is Basic Referencing, Scientific, Medical studies and research.  

I am yet to set up a blog and possible website with a view to help others along the way, my aims are to eventually raise enough for some real treatment/s and then any excess given directly to others to help them. >Proper testing, clinical diagnosis and treatment some years back would have saved the NHS thousands from my surgeries so far and potentially thousands more, that would have been preventable with better treatment/s. 

Further copies can be emailed at request, please This email address is being protected from spambots. You need JavaScript enabled to view it..

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Read 3658 times Last modified on Monday, 30 November 2015 19:20

Huib Kraaijeveld

Initiator On Lyme Foundation