STILL NO HELP AND NO BETTER

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hi its been awhile since ive been on this forum my health has been realy bad and ive been in hospital twice ive still had no luck getting my doctor to re-reffer me to infectious diseases ( referred to two 1st dismissed it without seeing me 2nd urged my GP to refer me to a local ID specialist-this didnt happen) I have had a possitive result but its only co-infection which hasnt been taken seriously. Im seeing a new neurologist on monday but i dont know if its even worth mentioning lymes to him. My GP does recognise the neuro symptoms- now so bad i can hardly move my head, legs giving way,co-ordination gone,nerve pain and body jolts (recent MRI scan showed cyst on brain) all my symptoms are worse than when i began to post early this year my doctor thinks maybe ENT or even autoimmune disease. I dont get why no one will take the fact it could be chronic lymes seriously but will send me to countless random specialist- GP keeps saying ive had antibiotics and i must admit ive had two 5 day courses of amoxyciline and a 2 week course of doxycycline in the last 5 week period for a chest infection that wont clear up so i suppose GP is thinking ive had lots of courses of antibiotics. if this isnt lymes i dont know what if could be the only bloods and ive had many test to come back raised are ESR 29 and IgE High cyst found in brain and stomach also enlarged saliva glands and sinusitus - any advice welcome as always and thoughts on other possible conditions please -vicky

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8 Replies

  • Posted

    I am so sorry Vicky to hear that you are so unwell.

    It the the Lyme co onfections, the borellia burgdorfii and babesis and others that cause the problems.

    Some folk are on various antibiotics for months.

    Have you contacted the person I thought might be able to help?

    Doctors have no answers because they don't know hor to cire it.

    Take heart, boost your immune system by the right diet, green juices.  , good freshorganic food, no dairy , no carbs or sugar and lots of supplrements that boost the immune system.

    Asg again to see the id specialist.

    Never give up hope.

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    • Posted

      hi thanks for your reply, i dont remember getting anything about someone who could help from you (ive just looked through all my post and replies on here) ive asked over and over to be referred again to a ID specialist no chance GPs will even consider it they wont even just phone public health england for advice or porton down lab (which is the advice to all GPs) my MP is still trying manchester and sheffield to hopfully get one of them to see me thanks again for your support-vicky
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  • Posted

    hello vicky, so sorry to hear how bad you are doing. I have had kinda same symptoms as you but doctors disgarded the possibility of lymn disease.  I had thought that I might be having MS despite having a clear MRI. my problem has started since February but till now am still suffering from this silent illness.

    My ESR is 65 which is way very high, i was admitted and put on anti inflammatory, then i started having hives and rashes and doctor prescribed anti histamines and doxycycline.

    Can you find a way to treat or brain cyst? maybe all are related, and thats y you are having high esr. Try to see an internal physician to find the root cause of your high esr and treat your cyst also.

    best of luck

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    • Posted

      thanks for your reply i also thought it was MS but neurology have said its not. im seeing a new one on monday to discuss the latest MRI that now shows the cyst i dont know if they can be treated but my GP doesnt seem concerned by this finding. have you been tested for lymes or just been dismissed without testing? how did you feel during and after the doxycycline? i am always worse when taking antibiotics which seems to be a herx reaction in people with lymes
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  • Posted

    Gosh I'm sorry your still in the same predicament. It's really unbelievably the state of all this.I do think you are going to have to go the private route as you clearly have one of the co infections so definitely have tick born infection, you just won't get the necessary help on the nhs. What's the point in these tests if they are even going to dismiss them when they are positive. Has your GP tried ringing the Lyme lab who sent results for advice (number is always on the test results).

    Another potential referral on nhs could be rheumotolgy?

    If your after proof for yourself have you considered private Lyme test? Sorry if you have said before but did you have blot test or just Elisa. If so was any bands at all positive on blot test?

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    • Posted

      HI thanks for your reply. i am at the point of having to go private but not in a finacial position to do it. my GP was given the numbers of public health england for advice,porton down lab and lymes disease action but for some reason wont make the calls. i had the elisa test also blot test (both neg) extended lymes panel was positive (anaplasma co infection) as far as i can see anaplasma can only come from a tick and being bitten by one is the only way it could be present in my blood yet my GPs keep saying that theres no history of the bite or rash!!! i cant understand there lack of concern and as they have no other explanation for my state of health why they dont look further into this-vicky
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    • Posted

      It's so disappointing to keep reading these stories. They will annoyingly watch us get worse and worse until you are under various specialists all dealing with symptoms and not the cause. It's crazy. Until there is a definite cure for 'chronic' Lyme and it is clearly understood I doubt there will ever be a definite infectious disease diagnosis on the nhs.

      Unfortunately as you probably see on the forums, patients are self treating etc. Do what you need to do to keep a lid on this. Obviously rule out other things it can cause. Auto immune etc. We are all different. people with Lyme tend to feel worse on antibiotics for quite a while, we can also can feel worse when we suppress the immune system. It also can be made over active by the disease so beware of things to boost it if your one of those as that as that can be a massive cause of your symptoms also. Not everything is a herx.

      Gosh we really need some human lab rats preferably the scientists/doctors who don't believe in this disease.

      I really hope you get on the pathway to treatment soon X

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    • Posted

      Vicky,

      Your Dr will not proceed further simply because he knows they have no cure  Or , maybe the powers that be have been "advised" to disregard all cases that do not give the recent history of tick bite/bulls eye rash/ ensuing fever and flue like symptoms.

      There is little/no research going on in UK on Lyme and co infections as they say the USA is doing it and we can use theirs when completed.

      Don't know why I'm bothering to explain as moderator will probably not pass it!

      What they don't seem to realise is that we can get this from bird and mice mites also. ( as has been researched in US.)

      It is a similar spirochete(bacterium) involved.

      I thought I sent you a message re a Doctor in the north who might help at very reasonable cost.

      But memory cannot be relied on these days.

      You need help and need it now so badger your GP to contact Porton Down and then refer you  to an infectiuos disease specialist.

      You had Elisa and possibly because that came back uncertain they did the western Blot which gave the result it did.

      It was definitely not a negative.

      Ask your GP how many other cases has he seen and how does he trest it.

      The answer I can guess.

      I wish you well and hope you get the help you need.

       

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