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lyme??

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dianne15921
dianne15921

I haven't been well for 14yrs and to cut a long story short after endless appointments and tests i was given the label of m.e/cfs 4 years later. I have tried all kinds of alternative things over the years because nhs gp's aren't interested. I was fit and active and i was a postlady for 17yrs and then bam my life changed. 2 years ago i had bad vertigo so i had a brain mri which showed 3 lesions and so i was sent for a LP and evoke potential test which were negative. I saw an immunologist and i asked about Lyme and he said because i couldn't remember having a rash that i didn't have it and he wouldn't test me. I can't just sit and except m.e/cfs because i feel it's a cop out of them really not knowing what it is. I have had a few weak positives with things i.e Rheumatoid factor is always high, Epstein barr virus was reactive and antibodies but no one ever delves deeper into it. I am going to ask my GP next week to test for Lyme but not sure what to ask for. Also read that the tests aren't reliable in the uk. Any advice?

1 like, 11 replies

11 Replies

  • poppy48517
    poppy48517 dianne15921

    Posted

    dianne sam ehere unwell for around 16 and before that active andhealthy- no recall of rashor bite, but nhs dont do the test well enough really, i had mine in  germany, it ws sent there onl probis nhs dont accept foreign tests,  even if it show spositive i suugest you join lyme disease action site they are very helpful
  • caitlin39841
    caitlin39841 dianne15921

    Posted

    hi dianne. whether  u have ME or Lyme u have my sympathies.  i do hope the Doc does the required tests for u or/and signposts u in the right direction.  

    dianne, i'm wondering why u think ME is a 'cop out'. there's lots of scientific evidence to prove ME exists  as a discrete condition.  for example, the WHO has recognised  Myalgic Encephalomyelitis since 1969 as a distinct organic & debilitating neurological disease. there's also a very specific diagnostic criteria for it.  and  u know what, it's a horror condition, very similar to Lyme. i've had ME  for some time & similar to u i've tried loads of alternative stuff. most helped to a degree, but none got rid of it.  the best  help i've  had was from high dose b12 & Folate supplementation, together with CoQ10, Magnesium, D-Ribose, Acetyl-L-Carnitine. my b12 was almost non existant.  ME tends to have lots of auto-immune type stuff going on i.e. IBS, IC, PA, thyroid stuff etc. etc. it might be worth looking up PA in the 'HealthUnlocked' website in the PAS section & comparing your symptoms.  many ppl with ME have b12 deficiency.

    C

     

    • dianne15921
      dianne15921 caitlin39841

      Posted

      Have you been diagnosed with lyme? I have tried all those you have mentioned at some point or other. I guess i just query m.e/cfs because there is no test to determine you have it. I have read that many stories of people being mis diagnosed with m.e or m.s and it being lyme all along.
    • poppy48517
      poppy48517 dianne15921

      Posted

      well it is thoughtthat me cf is lyme and fibromalagia i think most things as it i sth egreat imitator. i show antibodies to  borrelia,altho iam ill i dontknow if it is active or if it is the after math of damage who knows eh?
    • caitlin39841
      caitlin39841 dianne15921

      Posted

      yes, you're right dianne , there's no definitive test for ME.  i haven't been diagnosed with Lyme. i've gone with the ME diagnosis whether right or wrong - who knows? i had the mito. test and i had moderate-severe mito failure. that's the nearest to a 'specific' diagnosis that i've had. may i ask how long did u take the mito. nutritional support for?  yes, i think there's a lot of miss diagnosis going on where ME/Lyme are concerned. i know few ppl who were diagnosed withME whose symptoms actually disssapeared when the took b12 injections. they actually had PA. whether ME or Lyme they are life stealers.................and no-body listens, medical wise?
  • sky23
    sky23 dianne15921

    Posted

    Oh lots of advice..this is a fight and one I have just been through and it is ongoing. Firstly. GPs are not helpful on this one. It is important to approach it carefully from the beginning. Start researching. Its a sort of self education thing and you will end up knowing more than your doctor,,try not to show it. Not everyone develops an rash. The tests are not that accurate and it will depend on how long you have had it(if you have it) as you may fail to be able to mount enough of an immune response. The symptoms often present in a similar way to Fibromyalgia(there are no blood tests for that either but it seems far more acceptable than Lyme for some reason). There are private blood tests available for a price. It may be that you could be sent to infectious disease for a test. It is important that you sit down and list every sypmtom you have ever had..don't try to tailor it to Lyme. That is what you will need to take with you as it is better than trying to explain everything. There are good online supportive sites that if you email them will respond and answer questions. I was treated with a negative serotin result. Thing is I got better for 6 weeks..I was so relieved....then my symptoms returned. I was bitten 5 years ago. I lost a lot of the use in my arms very suddenly when put on a high dose of Vit 3. So they can treat you...but you have to stay totally calm, logical, and precise, because this is something that can easily be labeled an anxiety disorder  or figment of imagination. Finally it seems as though there is no test for the European strain of Lyme. I have contacted DOH and Porton Down on that one..About to try PH again for one last check.

    Hope it helped.

     

    • caitlin39841
      caitlin39841 sky23

      Posted

      wow Sky. you're a 'together'  woman. yes Doc/Medics LIKE logic.  they can work with that. when one's emotional, it's considered to be all in the mind/psychomatic etc etc.  how do u think Porton Down will be able to help?  and pray tell what is this about loosing the use of your with high b3? i'm all ears?  have u got back the use of them?

      c

    • sky23
      sky23 caitlin39841

      Posted

      Sorry I meant high level of VD3. No, it is because I feel as though I have travelled a field of landmines in getting to where I managed to get to..At first I was ignored or put down when I brought up the subject of Lyme with medics..then I was told I had fibromyalgia..when the symptoms are the same as Lyme and I was symptomatic since bitten. I had many appointments with doctors where I came away bewildered and afraid. And then I fought back when I became really ill.Oh I made a lot of complaints on not being tested in the early beginning as sero negative means I cannot be sure myself and the lack of testing had put me in a position where it could be any nuber of diseases.. Then after a lot of complaints in a lot of other pleces I found out there is a huge gap in training for gps on this subject..plus..it seems to be political issue. So I pulled back from wanting to scream, and put pen to paper and diaried every single thing from health to convesations with gps. When I lost a lot of use in my arms I found an outlet in lobbying various educational institutions to put more training on for gps..in fact I lobbied everyone I could think of..it was an emotional outlet..because I am coldly furious at the lack of treatment or concern. But the more I learnt, the calmer I got(ice cold fury)...I lost the use in my arms six months ago..I cannot describe this..sort of moving them in slow motion..some sort of resistance..hard..and a lot of pain and this affected my hands and fingers..when I finished doxy I had a clear afernoon..a crash..then a clear day..then a clear week..then about 5 of them I went back to infectious diseases and told them I felt so much better..then strangely enough they said it could not be lyme..ok..I have learnt not to take the bait when its down..

      ..then the doc put me on vit d 3 again..then it all came back..and I dare take no more of it.I am now doen to see neurology for nerve conduction tests. Porton Down will not help..supposed to be working of better testing methods but there weems to be a wall of silence. yet I have been able to speak with someone there to ask questions..once through using Public health who asked my questions for me to them and relayed the answers back..and more recently I am afraid I picked up the phone and called the number on the gov website explaining I was a member of the public and did they test for the European strain of Lyme..they answered no to that. then I put in questions with the department of Health. They came back to me with an apology and said I had to ask Public Health that question..round robin..and I am still fighting..

      Does that answer everything?

       

    • caitlin39841
      caitlin39841 sky23

      Posted

      Thanks Sky.  i've  picked up your msg. just now. wish the system would alert when msgs. come in.

      gosh, you've truly used your rage with the system to such good avail. i just get worn out trying to expalin to medics who have no clue & no interest  of how debilitating these conditions can be.

      i guess the bottom line is they treat the 'test' papers not the person with the presenting problems. also, if you're with a practice with a 'Docs knows best' culture, it makes it twice as hard.

      hope u continue to make progress.

      C

  • michal04846
    michal04846 dianne15921

    Posted

    Hi Dianne and folks,

    Please read about ILADS standard of long term antibiotics treatment. I couldnt find any doctor using this standard in ukrolleyes . In Poland there are at least 8 doctors using ILADS (rest of them IDSA treatment, same as in uk) - cost of visit is around 30pounds, ive got lucky with my doctor cos i can be in toch with him by phone, mine cost of monthly treatment (polish pharmacy) is around 150 pounds a month (antibiotics +supplements like vitamins,priobiotics etc.). None of test give you 100% sure that you have or dont have lyme. Often coming as a false negative. There is a test PCR real-time(POLYMERASE CHAIN REACTION), they looking for a bacteria (DNA of bacteria) in your blood - thats a 100% sure test if they find it, but it often happens that in blood sample used to the test - there wasn't bacteria at that time and that "place" (meaning blood sample), but it is somewhere else (like bones, joints, muscle etc.). OTHER TEST: ELISA, WESTERN BLOT, CD57, Im leaving in Scotland, and can only say: THERE ISNT ANY HELP FOR YOUR IN UK. They think if they give you 28days of antibiotics you'r fine, and if test showing (elisa, western blot etc.) in IGG class that positive, they will say you had a lyme but now your healthy. Its only mean that your body give up with fighting against bacteria, not destroyed it. Mine blood tests are and were excellent, but i was feeling like disable person. After 2 months of treatment ive got much progress, but still far from perfect (left sore legs when walking more then 20mins, sore collar bones, sometimes painful joints and chest, but it was far worst...). ALSO IMPORTANT TO DO THE TEST FOR COINFECTIONS (MYCOPLASMA, BABESIA, BARTONELLA ETC). HOPE IT WILL HELP TO SOMEBODY. PS English is not my native language.

    • Lemnia
      Lemnia michal04846

      Posted

      Thank you for all this very useful info Michal. I'm currently just started LDI treatment (low dose immunotherapy) but if it doesn't work, then I'm taking the route you suggest!  Fully agreee, next to no help in the UK. Hope you continue with the improvement, good luck to you. 
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