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Pragmatic course of Doxycycline for Lyme Disease?

Posted , 6 users are following.

LDLDLD
LDLDLD

Although my initial Elisa test appear to have come back negative .

I plan to ask for a western blot & clinical based diagnosis of LD and pragmatic course of Doxycycline .

If my Doctor won't agree to this, can someone explain the difference between the Doxycycline used to prevent Malaria available for chemist in the uk and the Doxycycline used to treat Lyme D,

0 likes, 10 replies

10 Replies

  • paloma789
    paloma789 LDLDLD

    Posted

    Hi there

    I'm not able to answer your question about Doxycycline but I can provide some information which supports the prescription of Doxycycline with Lyme type symptoma but a negative test:

    The doctor who set up the only NHS Lyme disease clinic (no longer functioning due to funding problems. I don't think you can give names of doctors on this site but if you should find him with an internet search.) has acknowledged that there are people who test negative for Lyme disease but have symptoms whose cause maybe either a continuing infection or an immune response. From the website of his (private) clinic:

    Chronic Arthropod-borne Neuropathy (CAN)

    There is debate and controversy amongst patients and doctors about the nature of so called ‘chronic Lyme disease’ or ‘seronegative Lyme’ disease. This illness appears to be different from the earlier bacterial infection of Lyme disease. In particular tests for Lyme disease by currently available validated tests are usually negative. Chronic symptoms are often non-specific: fatigue, muscle and joint aches, pins and needles, brain fog, headache are all common. It is not clear whether these symptoms are caused by persisting infection or persisting immune activation.... Because of the uncertainty of the cause and nature of this illness, a medical publication named the condition Chronic Arthropod-borne Neuropathy (CAN).

    This doctor, highest profile Lyme doctor in the UK, who works in the NHS, is saying that symptoms with a negative test could be due to continuing infection with Lyme bacteria - therefore taking a course of doxycycline to see if it helps is a logical response to this. 

    Lyme Disease Action apparently have information on their website (or if not, email them) about the dose of Doxycycline that is most effective against Borellia (Lyme disease bacteria) so you may want to take that information to your doctor too.

    • LDLDLD
      LDLDLD paloma789

      Posted

       

      Thank you for the reply .

      The information you have provided is very useful .

      I have already contacted Lyme Disease Action and they responded almost immediately with some great information, it was Lyme disease Action that suggested perhaps the doctor would be willing to prescibe a course of Doxycycline based on a clinical analysis.

      I have a feeling I will have to request a certain dose and course.

      Currently I am gathering all the infomation and printing out sections that I feel are relevant, composing a letter with attached information.

      However so far I have around 30 pages , I'm not sure a busy GP will send the time required to read it .

      Fingers Crossed.

      Thank you for the information.

  • fat_fingers
    fat_fingers LDLDLD

    Posted

    The doxycycline you can buy on line from Lloyds pharmacy is exactly the same. Good luck with your GP
    • LDLDLD
      LDLDLD fat_fingers

      Posted

      Thank you for that information , I just wanted to be sure,

      Well I just had my Doctors appointment (by  telephone)rolleyes.

      I was very well prepared - I knew exactly what I was going to ask for  ........and I had already decided to take the Malaria treatment , if the doctor refused to prescribe Doxycyclineeek.

       

      However I'm now having doubts .......cry

      I asked for the Western Blot and was told that the testing Lab could find NO EVIDENCE of Lyme Disease .

      I explained that the ELISA blood tests have been shown to be unreliable. She  basically said they know what to look for to establish if further testing is required.

       

      She advised that I should just continue to wait for my consultation with the Neurologist  because they could make a clinical diagnosis,  however she could not .

      I've been waiting to see a Neurologist since June ,  when I called the NHS to see roughly when I would be seen I was told  it could take another 10 weeks for an appointment .

       

      I asked if the Neurologist would be the best person to make the final  LD diagnosis or would they then  refer me to another Doctor?  She advised they might then  refer me to an infectious Disease specialist , when I asked how long that referral would then  take , she said  NHS guidelines are 12 weeks . So potentially another 24 weeks before I would even get more tests , let alone a diagnosis .

      Then I questioned her on why I hadn't been prescribed a course of Doxycycline, despite me having the bull's-eye rash. She asked could I remember a Tick bite and I again explained I cant remember being bitten specifically by a Tick however most people don't . exclaimShe said another couple of things could actually cause the Erythema Migrans.exclaim

      She strongly advised against a pragmatic course of Doxycycline , as it would make the diagnosis of Lyme or potentially another insect born disease , more difficult .

      I explained my frustration that it had now been 7 months since I initially asked for Lyme D  testing  and particularly the Neurological symptoms are causing me to become distressed.

      Even during the telephone conversation,  I was bumbling , I think it would be difficult for anyone to believe that I used to me fairly articulate.sad

      Now I'm back to square one , I cant decide to take the Malaria treatment and risk potentially curing myselfcheesygrin -  against - the treatment not working and potentially making the diagnosis of  another illness impossiblefrown .

       

      questionAm I correct in my research that around 80% of people with LD ( even long term chronic Lyme disease ) who take doxycycline,  respond to the treatment ?question

      Many Thanks for taking the time to read my frustrated ramblings .redface

  • fat_fingers
    fat_fingers LDLDLD

    Posted

    Could you afford to pay for private consultation? It usually costs about £200, it is amazing that if you pay can be seen within days. Really against my principles but desperate times call for desperate measures. 
  • LDLDLD
    LDLDLD

    Posted

    Hicheesygrin

    Thanks for getting back to me . I've been thinking about that??

    Yes, I can currently afford to pay for a private consultation.

    What would be involved in the consultation ?

    If I then have to pay for blood tests / MRI's and so on , I don't know that I could afford to pay for private treatment until conclusion,  as it could run into thousand of pounds .sad

    If its a clinical diagnosis based on symptoms and then a prescription for doxy? And not sure how useful that would be apart from the reassurance aspect . ( ruling out the other possible infections)

     

    I have 90% +of Lyme symptoms / Nuro- borrelios  .

     

    It could be worth it, just to have some expert advice . However if they recommended a course of private treatment that I could not then afford , i would be gutted,rolleyes

     

    I really don't know what's for the best  now .redface

  • fat_fingers
    fat_fingers LDLDLD

    Posted

    Do you have the name of the neurologist? If so you could ring his secretary and ask if he does private consultations. If so he would probably see you and then treat you on NHS. This has been my experience with rheumatologist.

    I also went to see Dr Dryden, microbiologist who charged £150 at Winchester Travel.... You can google it. He recommended that my GP prescribe me 2 months of clarithromycin and 1 month of doxy. I too had neg ELISA test and western blot but I had steroids for almost 18mths which can affect results. I improved on antibiotics but rheumatologist insists I have lupus despite neg results for that. I have since had deep tissue biopsy and am waiting for result. I am sure have chronic lyme with neuro involvement.

    where do you live? There is a clinic called Well One clinic..... Can also google that. Good luck xx 

     

    • LDLDLD
      LDLDLD fat_fingers

      Posted

      I don't know the name of the Neurologist .

      When I called the helpline ,  they put me on a cancelation list and said they would call me if they got a last minute cancelation . So that's something.

      I'm in Glasgow , so I think it makes it more difficult as many of the Lyme specialists  are in England.

      It's always on the news up here , about  NHS  Scotland and NHS England not giving the same treatments or drugs etc  ( for instance we get free prescriptions ), but we don't have the same access to cancer treatments and the like and vice versa.

      can I ask how much did you improve on the anti-biotics ?

      Did you see a Neuro ? Get brain mapping ( thats what my doctor keeps talking about ) ?

      Why clarithromyclin ? In America it seems like 3 months (MIN)  of Doxy is given , due to the bacterias breeding cycles ?

      I hope you get some answers from the deep tissue bio .

      Thanks for the helpx

  • paul21590
    paul21590 LDLDLD

    Posted

    it's the same doxycycline is used for malaria, lyme ,sti, to name but a few it is also used for dogs but under the brand name ronaxan
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