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Lyme Diagnosis

Discussion in 'Lyme Disease and Co-Infections' started by yabeeb, Jan 13, 2015.

  1. yabeeb

    yabeeb

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    Hello

    I saw KDM yesterday and was diagnosed with Lyme plus 2 co-existing infections and anaemia. I'm pretty sure one was called tetralysal and the other was something to do with exposure to mold but he spoke too fast and technical for me to understand. I know he talked about little black squiggly things..... I am quite astonished as i honestly thought he was going to tell me there's nothing wrong with me and its all in my head.

    I've been ill for 8.5 years so its such a relief/joy (!) to finally have some kind of diagnosis. I live near London in the UK so can't imagine how i got Lyme. Just bad luck i guess.

    Anyways, I don't really know anything about Lyme and need to make some decisions on treatment. We discussed the IV and oral antibiotic options and he thought that because i am still working that i should probably do the oral route.

    Might have been asked before but i have a few questions:

    1. Other than recovery via oral antibiotics taking longer, are there any benefits to IV antibiotics for treating Lyme?
    2. Are IV more effective than oral (i'm sure he would have told me this if they were)
    3. For someone in the UK, how do the costs compare for the two options? I assume you can't get the oral antibiotics on the NHS?
    4. Is 100% recovery from long-standing Lyme possible (he thought so!). Please say YES.....

    Thanks!

    Gail
     
  2. Valentijn

    Valentijn Senior Member

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    IV would have less impact on gut bacteria.
    Probably in some cases. But oral is normal if you're still pretty functional.
    IV antibiotics in the Netherlands were extremely expensive for me. Oral antibiotics are covered by my Dutch insurance even when ordered by a foreign EU doctor. I don't think anyone knows how much IV costs in the UK, because no one's been able to get the IV antibiotics administered in the UK.
    Might depend on how much damage has been done. But a lot of Lyme patients do seem to do much much better after treatment. I have a friend who I didn't even know had ever had Lyme until I mentioned my diagnosis, and she mentioned that it made a huge difference in her life some years before I met her. She now has two kids and is very active.

    On the other hand, patients who have developed moderate-severe ME might still have some milder issues when the Lyme is gone. I think it's really impossible to guess.
     
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  3. brenda

    brenda Senior Member

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    This is not correct, as Breakspear were going to treat me with a port into my heart until my funding was scrapped. Whether I would have taken it or not is another matter. The NHS guide for Lyme may have been the reason why the funding was scrapped. I don't know as they were planning on doing pesticide testing, and this one is very politically hot. It is possible to get NHS funding in principle.
     
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  4. Hanna

    Hanna Senior Member

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    Hi Gail, just a tiny correction : TETRALYSAL is a tetracycline which is often prescribed for Lyme as a baseline - to combine with other ABX and plaquenil to ensure optimal penetration into cells. I have been taking it now for 6 months (in a combo therapy). Generally very well tolerated (I am very sensitive to meds and chemicals). So probably, KDM will give you this molecule. And it is not very expensive (in Belgium, 20 euros for 28 units - 10.50 in France... perhaps because it is manufactured by Galderma, a French lab).

    You just have to be careful to take your probiotics regularly for the gut, and according to the patient, some antifungals and/or stomach protection (there are also natural ways for protection).

    Great that you have been diagnosed by a smart doc, best wishes for complete recovery !
     
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  5. gregh286

    gregh286 Senior Member

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    hi @yabeeb
    good news you got diagnosis.
    how long did you have to wait to see KDM and how long for results to come back.
    get well soon:)
     
  6. yabeeb

    yabeeb

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    Thanks for your reply @Valentijn. Very helpful.
    So does that mean i might not even have ME then? Are ME and Lyme is a completely separate/different illness to Lyme? When i asked him if he thought all my symptoms are due to the Lyme plus whatever else I have, he said yes. I am still learning though.......
     
  7. yabeeb

    yabeeb

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    Ha ha ha. Thanks @Hanna. Can you tell i dunno what i'm going on about?!:redface:
     
  8. yabeeb

    yabeeb

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    Thanks @gregh286. I think it took about 2 months to wait for the initial appointment from when I put my name down. I was then asked to return to the clinic in 2.5 months. Are you thinking of going?
     
  9. Valentijn

    Valentijn Senior Member

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    Lyme doesn't include PEM, though it can include exercise intolerance from OI. Both can feature neurological symptoms, but it would probably be a lot milder in some cases than in others.

    But basically you hear of Lyme patients frequently recovering completely, or pretty close, once they get thoroughly treated. I'm not sure that's true of Lyme patients who have progressed into ME, especially more severe ME with more intense neurological symptoms.

    It would be great if we could get more solid research into these things!
     
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  10. justy

    justy Donate Advocate Demonstrate

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    Hi Gail - good you have some answers - I hope treatment helps you. As you are still fairly functional I imagine you may have better gains than others.

    In answer to your question about NHS and antibiotics then yes, they will not prescribe orals for you. You can have IV abx at breakspear in London, but its very expensive and they now only offer four weeks. Kdm offers 12 for about half the price of four weeks at breakspear - but then of course you have to stay in Brussels for 12 weeks which is hard and expensive.

    Which co infections did he diagnose you with? I have Bartonella and chlamydia pneumonia, but my lyme test was negative - although he thinks I stil have it. He also thinks there is a biotoxin elemtn to my illness - I lived in very moldy houses 23 years ago - just before I got sick for the first time.

    Good luck with it all!
     
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  11. Dufresne

    Dufresne almost there...

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    @yabeeb, Valentijn makes a good point with regard to Lyme that has progressed to ME, or Lyme that has PEM as a symptom. In my online peregrinations I've noticed those with an ME presentation tend not to respond as well to only antimicrobial Lyme treatment as those without. I'm unfortunately in this group.

    I believe those of us with PEM are generally sicker and dealing with a greater number of complications. These range from biotoxins, to heavy metals, to co-infections, as well as genetics that aren't cutting it. It's important to identify and address as many of these as we can, and hopefully we improve. Sadly it's a minority of patients that actually do what it takes to get reasonably well from ME/CFS, and most of this is probably the result of them never learning what their biggest stressors are. There's so much testing, as well as trial and error involved.

    @justy, It's good to hear De Meirleir acknowledging the issue of biotoxins. It seems more and more docs are focusing on the complicating factors. Hopefully this is due to their observing patients improving from addressing them.
     
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  12. gregh286

    gregh286 Senior Member

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    Hi @yabeeb
    Yea i think i will.
    Could you send me the contact details.
    Certainly do no harm,

    cheers
     
  13. yabeeb

    yabeeb

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    [QUOTE Which co infections did he diagnose you with? ![/QUOTE]

    Hey Justine! Thanks for your message. I don't actually know what the other co infections were so guess i will find out when i get the report. He did say that if i was to get another one, I would probably end up in bed for the next 10 years!! Do you think he says that to everyone?!

    I hope you are doing OK.
     
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  14. beachy

    beachy

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    hi @@yabeeb I hope that you get some improvement from his treatment.

    If you take his letter and copies of the tests that you have had done it may be possible to get your GP to prescribe the anti-biotics for you, ours did, but it sounds as though you are getting diff AB's. But it will depend what specific medicines KDM has recommended, apparently the ones he gave us were according to the GP, fairly harmless, unfortunately also fairly useless. The GP hadn't heard of VSL(probiotic) so wouldn't prescribe it, but I think with a bit of arm twisting he would have. We have since found out that all the local pharmacists knew of it, and as it's pretty important to take in long-term anti-biotic use I think the GP could have been convinced. Otherwise it costs about £50 a month.

    If I were you I would e-mail the clinic and ask them to send copies of all the tests you had done, so that you have a record of them. It won't all make sense but you should then be able to work out which co-infections you have.

    Ticks in Berkshire carry Lyme, my daughter picked one up not far from Reading.
     
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  15. justy

    justy Donate Advocate Demonstrate

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    Yes - you can ask the clinic to e mail you all the test results - that's what I did - but best to ask by phone - they never seem to answer my e mails.
     
  16. justy

    justy Donate Advocate Demonstrate

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    When are you going back - I have an apt in march.
     
  17. yabeeb

    yabeeb

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    Thanks @beachy

    This is good to know. I work in a public health team so all too aware of the pressure on GPs and CCGs to save on prescribing costs. If there is limited evidence of effectiveness for a drug, and in particular, it is not NICE approved, then it will be difficult to get a prescription.

    At the mo I am leaning toward the IV route. It's been too long and I'm bored of it so I am looking into logistics.

    Might do as you suggest and ring the clinic for my results or at least find out how long the report will be.

    He didn't make it clear if I'd need to go back before treatment starts @justy - I got the impression I might. Would rather not though. It's a bit of a mission...
     
  18. bertiedog

    bertiedog Senior Member

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    @yabeeb You might find it helpful to read Dr Horrowitz's book "Why Can't I Get Better?". He has been treating complex Lyme patients for years and I think he is really onto something. For many it isn't just about infection.

    I have been diagnosed with borrelia and Ehlichia and was probably bitten in the New Forest in 1996 but didn't have real confirmation until last Summer.

    Good luck with your journey.

    Pam
     
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  19. justy

    justy Donate Advocate Demonstrate

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    I keep meaning to buy the book, but haven't got round to it yet.
    KDM is, I believe, in contact with Dr Horowitz and has started taking his idea of MSIDS more seriously - he asked me to take Richie Shoemakers online VCS sensitivity testing (which I failed spectacularly!)
     
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  20. bertiedog

    bertiedog Senior Member

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    @justy I also failed that test when I did it about 12 years ago. It would seem that for some of us our immune systems very stubbornly just don't work as they should. Mine seems to be ok in the spring and summer months but it all goes wrong once there are so many viruses around during the winter.

    It weird because virtually every time the symptoms are identical, starts with a very sore, drawing throat and muscle pains and very poor energy. Usually a migraine accompanies these symptoms. It feels like the same virus every time. Sometimes it starts with some sneezing but usually by the second day there is no sign of a cold and its gone into my throat and stays there.

    With the herbal treatment I have been doing since September (Cowdens protocol) I have managed to get by without antibiotics apart from 3 days of penicilin before Christmas when my throat was terrible. Last year the virus hit me 7 times and also a dose of Norovirus and so far its been 4 times this year.

    However I know I am nothing like as ill as you are Justy so I am grateful for that. Hope you do manage to tolerate some treatment. I have had to stop the Cats Claw and Japanese Knotweed because they are vasodilators and caused me such severe non stop migraines they made me feel suicidal. I am not so sure Samento does this too so am having to take this only intermittently. So far seem ok on the Cumanda, Banderol and Mora so grateful for that and these also have antiviral properties which is helpful too.

    Pam
     

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