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what do i do now - possitive result 2 referals and infectious diseases wont even see me

Posted , 7 users are following.

vicky89033
vicky89033

finaly after 3 years of unexplained progressive symptoms and lost blood test i got a positive result for lymes co-infection ( anaplasma) although basic lymes test was negative. my GP sent a very good referal letter with all my symptoms plus a supporting letter from lymes disease action who i had emailed many times and knew the history and symptoms which they included. the 1st letter from manchester infectious diseases came back saying i did not have lymes and should be seen by a cronic fatigue clinic! then the second letter has just come back from sheffield saying they strongly advice my GP refers me to ither manchester,blackpool or liverpool so i dont have to travel so far to sheffield my GP has read this as there is no point in taking this any further as manchester have already dismissed it. what on earth should i do now i just need to know have i got lymes or not and want to at least been seen before its ruled out but think my doctor has had enough of refering me. any ideas please

0 likes, 20 replies

20 Replies

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  • sarah47655
    sarah47655 vicky89033

    Posted

    Hi Vicky where did you have your testing done? Its just that I've just had a negative lymes test but have a low cd57 absolute which I know is indicative of Lymes. I never had the co-infections tests done but which I had. I have all the symptoms of Lymes and been referred back to our ID department. Where do you live?
    • vicky89033
      vicky89033 sarah47655

      Posted

      hi i had my bloods taken by GP then sent to porton down lab ( public health england) your doctor can print off the form from public health england web site and write " forward to porton down lab" on it also "please test for co-infections" the form also has tick list for symptoms and history details. good luck. i live north west england
    • sarah47655
      sarah47655 vicky89033

      Posted

      Thanks Vicky thats really helpful. I'll go back to my GP and suggest this to her. Hope you get somewhere and the treatment you need.
  • marie62224
    marie62224 vicky89033

    Posted

    What do you do now Vicky? You just keep on until some one  helps you.

    You  do what what you can to heal yourself. until someone  with a bit of  open mindedness  gives you the help you need.

    You have been lucky in your GP so far.

    If you message me I can give you the name of someone who may be able to help you. 

    Boost your immune system using all the things advised on the many Lyme etc forums.

    I bought a book called healing Lyme.

    Homeopathy has healed late stage or chronic Lyme as some call it according to a lady in US.   I wish I knew a UK homeopath who had experience of healing Lyme.

    Even if you cannot get to places there are specialists who will give you advice by phone.

    Why won't the goverment care ?

    How can so many people be suffering in this way and so few in officialdom  will admit that this real and isn't going to go away.

     

     

    • vicky89033
      vicky89033 marie62224

      Posted

      hi , thanks for your reply. im not sure how to message you but would be gratefull if you can private message me the name of the person who may be able to help. im not going to give up. i agree how can all the people on this forum have the same symptoms and continue to suffer without a diagnosis the cost to the NHS sending so many to numerous specialist, having test after test GP apts and medication given for unknown conditions not to mention sick pay doesnt make sence at all
  • dian55663
    dian55663 vicky89033

    Posted

    Hi Vicky,  I would find yourself a LLMD, a doctor that specializes in Lyme.  I have had Lyme for over a decade and was diagnosed with fibro and cervical dystonia amongst other things, I went to all kinds of doctors including an infectious disease doctor and someone told me I looked and talked like someone with Lyme more than most people Lyme, the person gave me a LLMD in CT and he diagnosed me with Lyme along with babesia.  He put me on 3 different types of anitbiotics, unfortunately I have a lot of neurological problems which will take me a very long time to recover from.  So, find a good LLMD.
  • craig60111
    craig60111 vicky89033

    Posted

    Hi Vicky

    Can you tell me what symtoms you have had especially the neurological ones 

    Thanks

    • vicky89033
      vicky89033 craig60111

      Posted

      hi craig, its a very long list - headaches vary from sharp random pain to head feeling swollen and slushy, vision problems-blarred vision cant ajust to light, foggy vision,balance problems,feeling unsteady,sudden feeling of falling/slipping,pains in jaw-ears-dental, neck and shoulder pain stiffness and cracking, gastic problems upper stomach pain goes into chest and ribs,reflux,nerve pain-burning-itching-stinging-pins and needles now both arms,hands,legs and feet,numbness-random areas,muscle twithing and stiffnes again random areas, joint pain,swollen glands,veins stinging and swelling again random comes and goes
  • dian55663
    dian55663 vicky89033

    Posted

    Hi Vicky,  very bad tremors, double vision, something to do with my reflexes, I can't remember they're either too slow or too fast, closing eyes and walking (I can't do it), there's just so many.  The other problems, pain in joints, muscles,nerve problems and bones hurt.  I've had it for quite some time.  There is never a time I don't have brain fog, it's just how much I have.  Memory, concentration, stiffness.  Don't give up, I gave up a couple of years ago because I went to so many doctors and the neurologist I get my botox from for my tremors told me I had fibro, cervical dystonia and some bigger neuro problem.  He also said many people have the same thing, I can't wait to see him on Monday to tell him what that bigger neuro problem is!!  My LLMD helped me.  Do you have them there?
    • vicky89033
      vicky89033 dian55663

      Posted

      hi , thanks for your reply. we all seem to have the same symptoms have seen many specialist and have no real diagnosis unless theres another disease similar to lymes that hasnt been discovered yet then lymes must be taken seriously but it isnt. i have been at the point of giving up many times as its hard having to fight when you feel so ill but i am going to keep going with this-vicky
  • marie62224
    marie62224 vicky89033

    Posted

    I will pm you vicky with someone who may be able to help. It costs but nowhere near the costs the charlatons charge.

    Cure seems to depend on place and income. If you live in US and in the right State  and presumably have mediacl insurance  or sufficient money then  you have more chance of a cure than being  poor, living in UK where gp's are either ignorant, uncaring or simply not permitted the resources to treat Lyme and co infections.

    Even the cost of all the things needed daily to manage this thing are beyond many folks' means.

    You then have to adapt to the situation and just buy  the minimum you can manage with.

    • dian55663
      dian55663 marie62224

      Posted

      So true Marie.  I had to go to a different state, Massachusetts has no idea what they're doing and it's an epidemic here.  Good luck Vicki, I didn't realize the UK was worse than the U.S.  I wish you the best.

       

    • marie62224
      marie62224 dian55663

      Posted

      dian,

      You wouldn't believe how hard it is here.

      Lyme is recognised in US.

      In uk you are either" depressed, Have some depression pills" or" imagining things" or its" dermatitis."( this by private dermatologists).

       

      If you try private LDD's(very few and far between) then  the price of  their treatment would make you depressed even if you weren't. before.

       

      Lyme? "No we don't have any cases of Lyme here.". They say.

      Well let a  good few GP's and their families  get it is all I can hope and then they can see for themselves and maybe get something done.

      Dogs get better treatment for it than do humans but then vets fees are huge.

      There is  little researchdone here  because  they say" why copy what the USA has already done." So they do nothing.  Meantime all these people are struggling and desperate and have to rely on support from the internet in order to cope.

      Of course there are exceptions. Vicky has had a good GP who is trying to help her but his hands are tied if further up the line no one wants to know..

       

    • sarah47655
      sarah47655 marie62224

      Posted

      Hi

      As far as I'm aware, we don't have any LDD's in the UK and if they're are any they're private and don't advertise themselves.

      From what research I've done the best in the world are in either Germany or the US Regards treatment I think the best results for chronic lymes are in Germany.

      We so need to catch up as regards diagnosing Lymes and treatment in the UK

    • dian55663
      dian55663 sarah47655

      Posted

      So sorry Sarah.  The doctors in MA are horrendous when it comes to Lyme but we at least have CT right next to us.  Really am sorry, but don't give up.

       

    • sarah47655
      sarah47655 dian55663

      Posted

      Thanks for message Dan. Sorry but whats MA and CT?

      That is one thing I will never do is give up smile. I have a great GP whos very supportive and appreciative of my research as it helps both of us. I am determined to get my life back for my family and to help others in the same situation. I was a long distance runner before I fell ill and one day my aim is to run again and raise money for Lymes and POTs UK charities smile.

      I wish you well too.

    • dian55663
      dian55663 sarah47655

      Posted

      Sorry, MA is Massachusetts and CT is Connecticut, 2 states on the east coast of U.S. 

      Great to hear of your optimism, you are a true survivor.

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