The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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General Questions Relating To Lyme Treatment and KDM

Discussion in 'Lyme Disease and Co-Infections' started by Hitension, Sep 6, 2014.

  1. Hitension


    Hi everyone,

    I have a number of questions concerning Lyme disease which I would like to put to you to see what you think.

    I must state that I am awful with the technical talk and scientific explanations so do forgive me if I come across as being a bit daft. Please also take into account that I'm not exactly "with it" while I write this piece. I find it very difficult to concentrate whilst typing at the moment.

    Ok, so firstly a bit about me. In July this year (after 14 years of being told I had CFS or "simply" psychological issues) I was diagnosed by Professor Kenny De Meirleir (KDM) at Himmunitas with Late Stage Lyme Disease and a number of co-infections including Yersinia Enterocolitica, Rickettsia Conorii, Chlamydia Pneumoniae and Mycoplasma spp, as well as a variety of severe food intolerences and gut dysbosis.

    I was given a treatment of:

    Week 1-6 - Rocephine 3 grams I.V, 5 days per week
    Week 7-12 - Azithromycin 500mg I.V, 3 days per week
    Week 13-14 Avelox (Moxifloxacin) 400mg, 1 a day for 12 days

    In addition to this I as recommended a variety of supplements including twice weekly injections of Hydroxycobalamin (B12) 10mg and daily doses of Vitamin C, Omega 3 and L-Gluthatine.

    I have another appointment with KDM scheduled in October (just after my birthday - lucky me!) and I have a number of questions I have prepared for him regarding my treatment but also treatment for Lyme in general. I have seen so many contrasting answers regarding Lyme disease that I really have no idea what to believe anymore. I therefore thought I would put them to the community for a potential consensus of opinion (or possibly just for some more useful references I could read) before I get answers from the main man himself. Ok, so here goes…

    1) Is there a difference between Late Stage Lyme and Chronic Lyme disease?

    I personally think there is a difference because Chronic Lyme is supposed to be the name given to people who still suffer from similar symptoms post treatment for Lyme. Late Stage Lyme meanwhile is Lyme that allowed to enter the later stages before treatment. I ask this question because KDM has confused me slightly by firstly telling me face to face that I had Chronic Lyme disease and then later saying in my diagnosis letter that I had Late Stage Lyme disease. Is this simply a mistake on his behalf? Prior to his diagnosis I had never been diagnosed or treated for Lyme despite being ill for the past 14 years.

    2) Is "Neuro Lyme" an officially recognised term?

    Amongst the myriad of symptoms I have had during my illness the ones which have always been there and have been the most debilitating are the ones which have affected my vision and cognitive function. If it does exist, are there treatments available which focus specifically on dealing with the neurological side of Lyme disease?

    3) How should I be expecting to feel after 12-14 weeks of antibiotic treatment for Lyme?

    This question is really a personal question as I am currently about to enter week 10 of my treatment and I really don't feel much better (only slightly) and I am in contact with a young lady at the same stage of the treatment as me who feels worse. I know that people react differently to the treatment but I have never heard of anyone responding quickly to treatment for Late Stage Lyme disease.

    4) Is going undiagnosed for 14 years going to significantly impact my recovery?

    Another personal question but I'm sure there are a lot of people out there who find themselves in the situation. I worry that whilst I've had this disease the antibiotics I've taken for other infections will have somehow made the Lyme disease more resistant to the treatments I am having now. Is this possible?

    5) Why is recovery more gradual rather than sudden if my antibiotics have successfully killed off my Lyme infection?

    I keep hearing doctors say that once this treatment is over then all the Lyme bacteria in your body should be dead….so why don't we feel better more quickly? Why do so many people claim to have Chronic Lyme disease? This leads me to my next question…

    6) Can Lyme disease (Borrelia burgdorferi) morph/adapt in response to antibiotic treatment in order to maintain a presence in the body.

    This seems to be a big debate throughout the Lyme community. If Lyme disease can morph/adapt to antibiotic treatment then that is surely one reason why people have Chronic Lyme disease. I personally prefer this option over those who say Chronic Lyme does not exist and that people still showing symptoms post Lyme treatment probably never had Lyme. I certainly believe however that other factors can cause many of the symptoms people using this website suffer from.

    7) Would it be more effective to combine different types of antibiotics so that the Lyme bacteria has no possibility of adapting to the treatments it faces?

    This question is of course a mute point if Lyme disease can't morph/adapt but if it can then why don't all doctors take this route. I know the antibiotics used to tackle the infections are strong but surely it is better to have a lot for a short period of time rather than quite a lot for a longer period of time.

    8) If my Lyme treatment was successful then how come my symptoms come back if I overexert myself?

    Its too early to say if this has happened to me but I did make a "complete" recovery from my illness after the first couple of years of being sick which lasted for more than a year. I then did too much and made myself very ill again and have never really been completely recovered again since. I'm very worried though that if I do make another good recovery (this time following an actual treatment) that I will always be in danger of relapsing in some way.

    9) Can non-related or semi non-related operations and procedures aid/worsen your recovery from Lyme?

    I ask this question because in January I will be having an operation for a deviated septum. The reason I want to have this surgery is actually largely to do with the many sinus issues I have been having the past two years. These sinus issues actually coincide with a worsening of my overall condition and so I wonder furthermore if having this surgery will actually help with my overall condition. I actually met another lady with CFS/ME who said that having an operation on her sinuses actually helped ease a number of her symptoms associated with her CFS/ME.

    10) What next after the IV antibiotic treatment?

    I have heard people take a variety of different treatment routes following the initial antibiotic treatment for Lyme disease that I really am not sure what my next phase of treatment will be/should be. I have heard that KDM normally progresses onto holistic herbal medicine but I am not entirely sure if this is correct and also just how effective this can be? What is the likelihood that I will be placed on more antibiotics? The uncertainty of "what happens next" is making me feel rather anxious so I would be very interested to hear what other peoples experiences were.

    11) Has anyone tried Rife Machine Therapy?

    I have read from a variety of different sources that this can be a very effective method of treatment and is unfortunately overlooked by many doctors as they have either never heard of it or they don't believe it works. I know that doctors in America are not allowed to suggest it to their patients as it is not approved by the FDA. My house doctor has managed to find a doctor fairly nearby who does this type of therapy but I was wondering if anyone else here has experience with this type of treatment.

    12) Can I record my conversations with the doctor?

    The last time I saw KDM he bamboozled me with so much "doctor talk" that I forgot a lot of the things he told me. Instead I remembered the unimportant stuff like the famous footballers he knows and that if a dog was injected with my "diseased" blood, it would die of shock in 15 seconds… Has he said that to anyone else here by the way? I was therefore wondering if anyone has asked him if it would be ok to record their appointment with him just so they can refer back to everything he says afterwards. There is no way I would be able to write down all the information he gave me last time fast enough. Are doctors generally happy to have their conversations with you recorded?

    Ok, so thats all I have at the moment. Perhaps I will think of some more questions before I see KDM next month but in the meantime I would be very interested to hear your answers.

    Thanks for reading and I hope you or the people you care for can find help and recover as quickly as possible.
    Helen likes this.
  2. Valentijn

    Valentijn Senior Member

    Sort of. Mainstream doctors and medical organizations don't believe that chronic Lyme exists. They believe that once Lyme is treated, it must be gone, and anything remaining is psychosomatic or the result of irreversible damage done by the past infection. So someone can have decades of untreated Lyme, but they wouldn't call it "chronic".
    I don't think so. But Lyme is widely acknowledged to have a significant neurological involvement in many patients, so while "neurolyme" might elicit some eye-rolling, I doubt anyone would object to "Lyme with extensive neurological involvement". It's a matter of semantics, but semantics can be important when dealing with skeptical doctors.
    I had a two week break between my 1st and 2nd antibiotics, due to KDM's clinic being closed. A week after ending the 1st antibiotic, I felt much better than I had for a couple years. But back on antibiotics, I feel crappy again. So I'd say during the antibiotics, you can expect to feel almost continuously crappy, but things are looking hopeful for when done with the antibiotics.

    When spirochetes die off, they produce a toxin which triggers some pretty nasty symptoms. So feeling crappy during Lyme treatment is both expected and a good indication of progress.
    The Lyme should still be treatable, but it's possible that some long-term or permanent damage has been done. However, treatment should still result in significant improvement.
    Maybe due to both permanent damage that has been done, and to downstream effects of having a long term infection. I've had Lyme for 20+ years, but only had ME for 3.5 years. I might be able to get rid of the Lyme, but I can't be certain that the ME will go away, even if the Lyme is what might have triggered the ME.
    There hasn't been any scientific indications of this happening, so there's not much point in worrying about what "might" happen. I think there have been papers showing that patients after treatment no longer have Lyme, even though some symptoms persist.

    The rest I either don't know the answer to, or I think are answered above.
    Helen, justy, ukxmrv and 1 other person like this.
  3. Hitension


    Hi Valentijn,

    Thanks for replying.

    Withs regards to Chronic Lyme disease, yes I had read doctors don't believe on its existence. I believe that KDM used the term by mistake when he spoke to be and that I have Late Stage Lyme disease. I have also seen the term Neuro-Lyme written in a number of books I have on the topic and this diagnosis would seem to fit my symptoms the best. I just wondered if KDM had told anyone he had spoken to that they specifically had neuro-lyme disease.

    With regards to the progression of my treatment I have been waiting for a "herx" reaction, in fact I was hoping for one just to justify that Lyme disease was the problem but I have not had one. Certainly not one of note anyway. A few months before I began my treatment I did take a prescription of Doxycycline for another ailment which did make me feel very tired and I am starting to think now that this may have been a "herx reaction".

    With my current treatment I didn't really notice any real difference whilst I was on Rocephine but the every time I take Azithromycin I always feel a little better on the day and then a day or two later I go back to feeling how I did before. I was expecting to feel worse or better but instead I generally just feel the same level of "crappy" This concerns me greatly.

    Have you been treated for Lyme with KDM? What has your experience of dealing with Lyme disease been like? Has your condition improved over the years at all?
  4. Thinktank

    Thinktank Senior Member

    Everyone with late stage lyme disease has a certain degree of neuro-lyme (neuroborreliosis)
  5. Daffodil

    Daffodil Senior Member

    I know someone who records his appointments with KDM, but I prefer to not do that....I think a doctor would be less relaxed and open if he were being recorded...but it is understandable not to want to miss anything.

    With chronic lyme and CFS, I think there is an autoimmune component which makes it difficult to treat.

    I have been treated by KDM for I think 1 1/2 year .. My CD4 has gone down and I have had moments where I am sure I am being helped. Other times, I am not so sure.

    I think the antibiotics were helping but were very hard on my body. The Cowden protocol, I do not think is helping...but I could be wrong.

    It is possible that the antibiotics are helping for reasons other than Lyme..maybe they are acting on bacterial translocation from the gut? Who knows. I am still very glad I am seeing KDM, though. Not sure if there is anyone who is better right now.

    I think that most cases become more complicated and take longer to resolve if they have gone on for a long time.
    Last edited: Sep 7, 2014
    Valentijn likes this.
  6. Gingergrrl

    Gingergrrl Senior Member

    @Hitension I would avoid Avelox and fluoroquinolone antibiotics if you can. I do not have Lyme so cannot comment on your general post but this class of antibiotics are very dangerous and quite brutal on the system so I would inquire if there is an alternative.

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