has anyone had negative test for lymes then had posative extended lymes panel

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hi ive had progressive symptoms of cronic lymes for 2/3 years ive been to every specialist possible neuro,gastro,ent,endocrine,cardio had every test available and nothing obvious has ever shown up. now had negative ELISA test for lymes as expected but im still waiting for results from porton down (c6,immuno blot and extended lymes panel) its been over 2wks no results yet how long does this usualy take? also has anyone had a negative result then had a possitive after further bllod test for the above tested

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  • Posted

    Hi Vicky,

    My test results came back within 24 hours from Porton Down. You should chase it as I have heard of people's tests being lost. Make sure the test was done at Porton Down and not your local hospital. I've heard of cases where it goes through the normal blood test lab via the NHS and they come back as "normal." You have to keep asking questions to get further forward with Lyme Disease.

    All the best.

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    • Posted

      thanks for your reply as you mentioned my bloods did go to the local lab and i got the neg result then after me complaining to the PALS office at the hospital the lab said they still had my blood stored !?! and would forward it to porton down ( this was seven days later) i now have no faith it has even got to porton down and i know my GP will just look at my negative result
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    • Posted

      Yes, you need to keep chasing and challenging. Ask why they stored the blood, for what purpose? I've heard of this and it's not acceptable. If you want better advice than I can give contact Lyme Disease Action. They really helped me and I started getting somewhere with my GP once they'd advised me on what to say. Google them and make contact, they will help you.
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    • Posted

      thanks i have contacted lymes action uk they have been very helpfull. i presume you tested possitive whats your story if you dont mind me asking.
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    • Posted

      hi just a update to let you know i was right to have no faith in my bloods being forwarded to porton down for futher testing i found out today after waiting 3 weeks for results porton down have no records of my bloods going there. my local lab assured me they had sent them so looks like another battle ahead to get the whole thing done again
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    • Posted

      Hi Vicky,

      There shouldn't be a battle. Contact Lyme Disease Action, tell them what's happened to you and they'll advise you on what to do next. You must be tested again and your GP should be able to send it to Porton Down quickly. My results came back within 24 hours.

      Keep going, you will get there. You're not the first person who's bloods have been lost.

      Caroline x

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  • Posted

    Hi Vicky ,

    I tested negative for Lyme but the specialist I saw told me that it's unlikely to test positive in late stages they made my diagonised on the basis of my bullseye rash that my doctor saw but didn't know what it was 2and half years previously ans my symptoms , ive been on antibiotics since june 2012 still fighting now but soooooo much improved , do u remember a bite ? Not everyone gets the rash , what are your symptoms ? Sorry so many questions if I can help at all please message me

    Best of luck

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    • Posted

      thanks for your reply. i cant remember a tick bite but before i was ill i was always out walking in the yorkshire dales and lake district woodland meadows and staying on farms so was bitten by insects but i cant say for sure a tick. i didnt have the rash. my symptoms started in 2011 but in the last 2 years are unbearable. the list is long but here goes-headaches/migrains,balance problems,muscle pain,twitches,spasms,joint pain all over body but worse knee,neck,shoulders,wrist,gastric/digestive problems(so bad had gaul bladder removed 2013 but no better) difficulty swallowing,neuropathy-tingling,burning,itching skin,pins needles and numbness inc face,blarred vision,light sensitivity,tinitus,sinisitus,shooting,stabbing pains,weight loss 14kg(now under weight) brain fog feeling spaced out,dry mouth always have mucus in throat,swollen glands,low blood pressure,palpatations,feel dizzy,weak and drained-i have seen every specialist had numerous test nothing obvious wrong doctor is at a loss but isnt realy interested in lymes. which specalist did you see? any help would be appreciated im at my wits end just need to know how i could go from being so active to struggling in pain 24/7 with all these crazy symptoms
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    • Posted

      hi kelly i found out today after waiting 3 weeks for results porton down have no record my bloods were sent there. it took 2 weeks for my GP to find out what to test for then instead of filling in the form from public health england which i had given her full info on from lymes action uk she just filled out a standard blood slip it went to my local lab who didnt seem to know what to do with it a week later they assured me it had been sent to porton down obviously not i am gutted thought i had a chance of an answer  
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    • Posted

      Useless is the word lol !!! Bless u Vicky don't let this get you down I no that's easier said than done I personally don't hold much respect for there testing in Lyme disease anyway , go back to your GP hun or find a different one that will listen if they have exhausted all other medical testing for everything else then what is the harm of trying say 3 months worth of antibiotics ? Try this approach with ur GP , take someone with you whom has given you support and has seen what u r going through xx
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    • Posted

      thanks for your support ive made an appointment with my GP and will try my best to get them to listen im going to ask for a refferal to a microbiologist think thats the only way forward with this. my local PALS office rang today to tell me the bloods had been sent to porton down 2nd feb and the royal mail have tracked it as arriving but theres no record of it after that porton down lab have no idea what happened to it! you couldnt make this up. my local lab are now sending further stored blood (why they have my blood stored is beyond me) hopefully these ongoing mistakes may make a difference to my GPs thinking 
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    • Posted

      hi kelly, ive spoken to my GP after finding out my bloods went missing she said i still have to wait for results as local lab have said they would send more stored blood to porton down. i tried everything i could i said the test doesnt seem to be reliable and that ive been tested for so many other things that lymes seems to be a reasonable thing to look further into given all my symptoms she didnt agree and dissmissed it again. ive had the worse weekend ever in so much pain- shoulders,arms and hands stinging and stiff, headache so bad affecting vision and all glands swollen im going to go into surgery tommoro and ask what they plan on doing now as im at my wits end and just hope they dont put it down to anxiety. proberbly another waisted trip but i cant carry on like this. just wish my doctors would open there minds and atleast show some concern/compassion. theyve made me feel such a nusance that i start rambling when i go in which doesnt help. any advice on what i should say in a firm but friendly manner. i wish they would admit me to hospital for observation at least then they would see how much i suffer over a 24hr period (not likely though) -vicky
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    • Posted

      Omg this makes me so angry , this is not on ! They the GP s have a duty of care to thier patients , do they think that we keep going back just for fun ! I would put to your GP .. Why are they waiting for test results that they themselves no are unreliable if not useless .. And why even if there was the smallest of chances that you had this awful illness why would they not trial you on the antibiotics as this is really the only way to confirm it , and if they new enough about this awful illness would they want to delay treatment by even another day as its so difficult to treat the longer it is left , try your best to stay calm and not ramble hun Wright down what you plan to say before you see them become a thorn in there side you count , you matter !! This is your health , push for the antibiotics in a very firm manner of they don't listen find a surgery that will , I'm horrified by the complete disregard of you symptoms this alone should send alarm bells ringing , I'm here if you need any support

      Good luck

      Kelly

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    • Posted

      as expected my GP fobbed me off again. i went well prepared with the info lymes action sent me to try and get trial treatment but she was not taking me on. i gave her the email address for lymes action GP advice line also public health england GP helpline for susspected lymes she still wants to wait for results! i told her how ill and desperate im getting and she actualy said im going to the surgery too often. she said i had been 28 times this month i said hows that possible when its only the 22nd to which she quickly said that includes ringing for test results and letters going to them from specialist! obviously she has had enough of seeing me and must think i like going having to beg. for some help. if they would listen and try to at least phone lymes action if they dont know what to do then i would feel better than i feel now not knowing what to do.
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    • Posted

      Oh Vicky, this is a horrible situation for you. I understand how you feel. When I was in terrible pain and hadn't been diagnosed, I used to go to the doctor's every other day and even had to call an ambulance one night when I thought I was going to die. I think the GPs get "patient fatigue" and stop listening. Mine certainly did and told me I was reading too much on the internet and to stop self-diagnosing (Lyme Disease!). By chance, I saw a duty doctor who immediately suspected Lyme Disease and my test came back positive.

      Change your GP - you have a right to do so. Contact Lyme Disease Action again and tell them what has happened to you. It's so hard when you're in pain and desperate for treatment when GPs dismiss you.

      Caroline x

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    • Posted

      This jyst goes to show what is wrong with our healthcare system in regards to Lyme disease even if Lyme disease is suspected treatment should start straight away especially knowing how difficult it is to treat , your GP im sorry to say is ignorant to your needs ! and is showing a complete lack of care to you , change you GP I saw 3 different GPs before like you Caroline saw a duty doc whom suspected Lyme disease and started treatment straight away , if this again fails change surgeries find one that is sympathetic to you , please don't feel like a nuisance because you are NOT , you are ill and desperate ! Im so sorry you are having such a difficult time with your surgery , I know you feel alone but you are not you will get a GP that sympathetic to you and what you are going through Lyme disease is pandemic and sooner or later the nhs will see this , please stay strong Vicky here if you need anything xx
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    • Posted

      thanks for your support. ive spoken to my advocate( who has attended hospital apts with me in the past) she is coming to see me this week and wants me to make a GP apt next week she wants to go with me to ask why on earth are they are so reluctant to do anything that may help. she has asked me to gather as much info as possible so she can put it to the doctor for me. hopefuly they wont give her the brush off and im sure they wont be so condisending if someone is there to hear it.she has said she will help me make a formal complaint but as the locom doctor who is at my surgery saturdays is realy good (she has done more after a couple of visits than the rest have in 2 years) i dont want to rock the boat. she did say that the fact my bloods were lost was unexceptable and even said if you do have lymes thats another month you have suffered. maybe i should just see her from now on.
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    • Posted

      thanks for your support im not sure how to reply to 2 people but please read my reply to kelly. when you had a possitive test result was it the ELISIA test you had done at porton down or the extended lymes,immuno blot and c6? ive been told today after all the mistakes with these blood samples it will take a further 3 weeks for results
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    • Posted

      hiya kelly, i had the meeting today with a different GP and my advocate. wasnt great but she did agree to give me 14 days doxycyline 100mgx 2 each day not sure that will do anything but its a trial dose. my blood results still havnt come back from porton down ive given up on ever getting them now
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    • Posted

      Hey Vicky ,

      Now this is a step in the right direction 😃😃, do you mind if I give you a bit of advice , make sure you eat before you take this antibiotics as they are quite hard on the stomach I was sick a few times when I didn't eat first , don't be concerned if you feel worse before you get better it took me a full year and a half to feel half human again , it's better to start of slower personally as it will start to kill of bacteria and this is a herx reaction and your symptoms will seem worse but you will start to feel better as hard as this all is detox is soooooo important hun ,helps with the brain fog big time , I hope this is the start of treatment for you and you get the right amount of treatment , good luck hun kel xx

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