Lymes or brucellosis?

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Hi everyone. I am an hgv driver. Thirteen years ago i started collecting raw milk from farms for a very well known Danish food and dairy company. I imagine most of you have some items in your fridge from this company. At one of the farms the farmer gave me a drink of tea every day, obviously with unpasteurized milk. I never thought anything of it. I'm 49 now but when i started i was 36. I was extremely fit and in great shape. I lived and breathed the gym. I have not drank alcohol since my teens and haven't smoked since i was 22. I was a picture of health but then i started to feel like i had the flu. The first thing that happened was i started with a pain in the back of my neck and whenever the pain came i seemed to have the flu. Doctors said it was coincidence.  All of my joints started to  hurt and i was tired all the time and the depression was awful. This went on for several months. I thought my days at work were done.  The doctors were useless! I eventually went to see a different doctor who actually listened to me. The next day i was collecting milk near Leicester ( i remember it so clearly )  when the doctor actually rang my mobile! She rang my home and my wife gave her my number. She said i want you in hospital immediately. She had made some enquiries and she was told i had signs of Brucellosis. We did samples of milk to test for this disease so i was horrified! I went into hospital and had some tests done but they came back negative. None of us want anything positive but i knew i was ill. I hit a brick wall. GP's dont like anything out of the ordinary it seems.  I don't remember why but i ended up on nights at work. No word of a lie within a week i was well!! I went back in the gym and put it behind me. It was like a lottery win. I was euphoric! To be so ill with no diagnosis and then it just goes is an amazing feeling. I put it down to not having the tea off the farmer......maybe! Then after a while it started again. The pain in the back of my neck and the flu. It would come and go. I would be ok for about two weeks and then it would come back again. The gap of having the symptoms and not having them got smaller and smaller until i had them all the time again. The doctors dismissed it was my job! My neck got loads worse. Five years ago i got out of bed and couldn't stand up because of dizziness. I couldlnt drive so couldnt work. Doctors said it was my ears so i had loads of tests which were negative. I knew it was my neck. It moved into my lungs approx the same time as my dizziness. I started spitting up loads of stuff off my chest. I had X-ray and was told i had pneumonia. They gave me a weeks course of doxycycline. I went for another X-ray only to be told it had cleared up. It hadnt cleared up because my lung pain was still there and i was still feeling ill and spitting up stuff off my chest! The company i worked for gave me medical termination but would not admit it was work related. They treated me terribly to be honest. Present day my symptoms are much worse. One doctor told me i had fibromyalgia but another doctor told me that fibromyalgia is an easy way out for an unknown illness. I still have the joint pains and flu and loads of sweating.I spit stuff off my lungs so many times per day every day. I have pain in my lungs my kidneys and there are lumps in my neck which hurt to touch them and make me feel sick. I have an allergy to shaving and cannot use shaving cream now and only use clear water. I have a buzzing sound in my right ear. The worst thing that's happening is i now have numbness in my hands and feet. Its my little toes and small fingers mostly. I am still hgv and now this is affecting my job. I have a great job but dread going to work now because this is making driving difficult. I'm putting up with all these things every day. I no longer go to the doctors because i feel there sick of me and i'm wasting there time because they obviously think i have fibromyalgia! I suspect that some people reading that will be agreeing with me. I don't act ill if you know what i mean so people i work with have no idea apart from some days sweat is dripping down my face so i just say i have the flu. I don't know if this is Lymes or Brucellosis but it is definitely a bacteria i just know it. Some of the farms were disgusting i got covered in milk many times and other stuff as well. Life is so difficult now and the gym is just a fond memory. I have had quite a few blood tests but they come back negative but everytime they tell me something about my liver which i dont understand. Its so frustrating. I want to go private. We are willing to even sell our home to make me better but we don't know who to trust private doctor wise. Also, has anyone out there had a blood culture test and if so who with? Sorry its so long and many thanks for reading, Steve.

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10 Replies

  • Posted

    Hi Steve

    Firstly, so very sorry to hear you are having such a rough time. You are not alone, many of us go from doctor to doctor and leave each appointment in frustration and dismay at not being either understood or in any way diagnosed with anything remotely close to what the problem is.  

    Have you been tested for Lyme? If so, where? (meaning which lab?). I was oringinally tested for Lyme as I exhibited all the features and new it was highly probable as I'd lived in CT, USA for 28 years, but didn't get ill until I moved back to the UK. Anyhow, my original Lyme test in the UK was negative, twice! It was only when I decided to have blood sent privately to a reputable and dependable lab in Germany that the test showed a positive for Lyme (BB). I did not have a tick bite that I was aware of. So if you have not had a reliable Lyme test done, I'd go that route first if I were you. Good luck to you. 

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    • Posted

      Hi Lemnia. Many thanks for your reply i really appreciate it. I  have read on the internet a story about a guy who was very ill in hospital in Burton on trent which ironically is 4 miles away and my wife works there! I am sure if you search Lymes disease stories you will find it. The consultant ruled out anything like bacterial disease. There happened to be a German doctor over who by chance seen the guy and said more or less straight away he had Lymes disease. The consultant said no. Long story short she was proved right and the guy was making a full recovery. Ironically the consultant mentioned my wife knows! I had forgot about this story until i read your reply. Do you remember the lab name? Many thanks Steve.
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    • Posted

      Hi Lemnia. I was going to say you have no idea how much i appreciate it but after going through it yourself i know that you do. Many thanks to you and all the best Steve.
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  • Posted

    hi steve. needless to say, like lemnia, u have my deepest felt sympathies for the suffering ur experiencing and not least, the attitude of the health care professionals, whose behavior, often make us more distressed & ill than the condition itself.

    in respect of the diagnosis, certainly the picture brucellosis comes to mind. i don't know how conclusive the blood tests for that are, or if they need to repeated a number of times before it can be ruled out or in. however, regardless of the test results, the medics should be looking at ur clinical picture & be referring u to the 'specialists' i.e 'infectious disease' consultant or a neurologists (both in my opinion). u clearly have progressive symptoms. i'm wondering if:

    1) u have lost any weight with this condition?

    2)have u had ur sputum tested for organisms & sensitivities?

    3)had any tests to rule out diabetes

    my suggestion/s would be NOT to be fobbed off by ur GP's negligent behavior. it's ur health. i'd take someone with me to the GP and insists on a referral to a specialist, perhaps, initially to a neurologist to have the numbness diagnosed.

    also have a look at the 'health Unlocked' website. they have very authoritive information on there if u can access it. be as informed as u can. i'm sure u'll get more good advice on here too.

    Caitlin

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    • Posted

      Hi Caitlin. Many thanks for replying to my post i really appreciate it. Thanks for the advice and the health unlocked website i had never heard of it. I have already checked it. Thank you so much. All the best to you Steve.
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  • Posted

    Hi Steve, 

    sorry to hear you are feeling so awful and about your experiences with the doctors. To me it does sound like someting has bitten you at some point. I'd doubt that it was something you had eaten or drunk, and I'd be careful mentioning this to the doctors, as I dont think Lyme can infect in this manner (but don't quote me on this, it just doesn't sound likely). I'd say it is quite likely however to stem from an insect bite, perhaps from your spending time at farms. 

    Keep your spirits up, you will get better when you get some help. I had Lyme 15 years ago without any treatment, and 10 years later it had vanished slowly on its own. I then got bitten again, with the rash appearing last summer, got treated within 2 months at London Hosiptal of Infectious Diseases, and now symptoms are completely gone. Their testing is terrible however, so without a rash to prove the disease they are not much use.

    I wish you all the best, and hope someone has some good tips and names to put forward to you, which will come to good use for you. There is a facebook group;  Lyme Disease UK Discussion Group - they have compiled a list reviews of treatments available around the world and UK, perhaps it is useful for you to join, if you havent already. Hope you feel better soon.

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    • Posted

      Hi Mana. Many thanks for your reply and encouragement. Its nice to know were not on our own! I dont have a facebook account but my wife does and she has already joined the LD UK discussion group which she joined straight after reading your reply. I really appreciate it. All the best and many thanks Steve.
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  • Posted

    Hi Steve

    Really sorry to see hear your story. It sounds like getting high quality tests for Lyme Brucellosis and whatever else a good doctor would recommend for you could be the way to start. 

    Some things I have found out that may be helpful:

    From what I have gathered, because there are problems with Lyme testing, most exerienced doctors working in the field who are able to listen to their patients and really try to do their best for them, say that Lyme is a clinical diagnosis - meaning that a diagnosis should be based on symptoms, rather than testing. This means that even if you do get a negative test, there is still hope of finding a treatment. 

    It seems that there is a big gap between doctors who treat people with Lyme in the US and also Germany, and most doctors in the UK. There have not been enough clinical trials on many aspects of Lyme diease, but some doctors in the US have a lot of experience of what helps their patients. Doctors over here are often not well informed enough to utilise this knowledge and can be rigid in their thinking. The upshot of this is that to get good care it may be necessary to find a doctor abroad (though this doesn't necessarily mean you have to go there, some will do Skype consultations).

    The Lyme Disease UK Facebook group already mentioned is a good source of information. If you ask a question they are very helpful. 

    Lyme Disease Action - http://www.lymediseaseaction.org.uk - if you have not already found them - are the UK group who provide information on Lyme Disease to doctors and the public. They have a patient support email on their website and also patient stories and organise a conference for both patients and doctors. 

    Let us know where you get to with your search for a diagnosis and treament.

    Best wishes with it.

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  • Posted

    Hi Steve. Hope you've had some progress by now. I had similar symptoms and it turned out to be brucellosis. The key clinical feature was the profuse night-time sweating, which had a characteristic odour - sickly sweet, but foul. Infectious disease specialist was straight on to it. Classically compared to rotting hay and I'd say that's not far off the mark. Virtually nothing else gives this symptom, so if present would certainly support brucellosis. I got it from drinking unpasteurised goats' milk.

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