Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Young UK Musician with lyme

Discussion in 'Lyme Disease and Co-Infections' started by roller, Mar 10, 2016.

  1. roller

    roller wiggle jiggle

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    Read more:http://www.dailymail.co.uk/health/article-3485588/Lyme-disease-forces-musician-dream-career-Sony-devastating-symptoms-leave-bedbound-23-hours-day.html
     
    Last edited by a moderator: Mar 10, 2016
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  2. roller

    roller wiggle jiggle

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    "seeking specialist medical advice in Brussels" - may sound like meirleir.

    why would he not stay with his treatment, but seek to see another doctor in the US ?
    which one could that be?
     
  3. helen1

    helen1 Senior Member

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    @roller, he's one of our members here, @trickthefox! I'm sure he would answer your questions.
     
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  4. *GG*

    *GG* Senior Member

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    Is he not on this forum? Thought there was a young lad from the UK who has posted videos here?

    GG
     
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  5. trickthefox

    trickthefox Senior Member

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    Hi , yeah this was me, I am still seeing KDM, im talking to him today on the phone infact, its just after keeping closely in touch with other patients, and spending a huge ammount of time researching antibiotic protocolls, I'm not convinced KDM's lyme approach is correct, given the combination of antibiotics needed to target intercellular pathogens, persisters and coinfections, I could be wrong as I know chronic lyme treatment is in its infancy, but a pulsed combined antibiotic protocoll seems more promising, and i've spoken to lots of Jemseks patients who are doing quite well on it!
    I still plan to stay with KDM as I think he's a great Dr, and am doing follow up testing with him this April, but from talking to alot of people going through lyme, and from how severe my symptoms have become in the last month alone I'm leaning towards washingtoin
     
    Last edited: Mar 11, 2016
  6. JNGriffy

    JNGriffy

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    Hi, also seeing KDM and at easly stages of lyme treatment protocol. He has me on 1 week of cryptomycin per month for first two months, with usual probiotics and supplements. He did not outline his longer term strategy yet. I, too, am wondering if antibiotic combinations would be a better approach. Perhaps KDM's idea is to build up softly, softy? I am impatient though, and thinking of heading to the US to see Jemsek as well.
     
  7. JNGriffy

    JNGriffy

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    @trickthefox just curious: did KDM communicate a longterm protocol/plan with you?
     
  8. trickthefox

    trickthefox Senior Member

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    So i had a phone consultation and still feeling rather confused. I told him of my worsening of symptoms and he said 'its a herxheimer' i explained that i wasnt on any antibiotics or any antimicrobals right now and he said 'we don't have a name for what's happening yet'... Didn't leave me feeling hugely confident
     
  9. JaimeS

    JaimeS Senior Member

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    ....which is what he's doing with me. It probably depends on when you first got his advice. That paper that demonstrated pulsing abx kills Lyme only came out in the second half of 2015.

    The first time I saw him, he prescribed one antibiotic, but by the second time I saw him, he was pulsing. Before and after that paper was published.

    KDM really does do different protocols for different people, though, and he may have decided pulsing wasn't right for your symptoms; I am much less severely afflicted than you. I'm really sorry your symptoms are so awful right now, @trickthefox , and I hope you feel better soon!
     
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  10. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Really hope Washington helps you @trickthefox !

    And please don`t be mad at me for bringing this up, but Ive been thinking a bit about your situation, and I think if I were in your shoes and AB-treatment doesnt help - that I would not write ME completely off. And I suppose the irony is that, if so, that`s actually a "good" thing, due to the promising treatment coming along for ME.

    I mention this as your symptoms are consistent with Lyme, but as far as I can tell - also with ME. And that must be a big mindf*** for u ofc.

    Obviously I don`t know your whole story, so read this in light of that.
     
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  11. trickthefox

    trickthefox Senior Member

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    Not mad atall - infact given that M.E. still hasnt found concrete biomarkers of what is causing it, I believe I have lyme caused M.E. if that is such a thing - It may be that M.E. is found to be its own unique illness - but I think the realitiy is that M.E. is an umbrella term for a host of autoimmune problems - and predominantly fatigue and neurological problems.

    I have a bunch of autoimmune reactions are happening in my body - most likely triggered by the lyme - but also possibly triggered by MMR vaccine/parasites/the malnutrition caused by lyme/general western living - diets/drugs/alcohol. My quest above all things is to get better - so I will always keep an open mind and an open heart :)

    For me it makes sense to go after the most obvious problems first, in hope that it will calm my immune system, all I can do is try!
     
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  12. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Phew! Allright cool, then we share the same thoughts of that :) I also expect us here to have a variety of undiscovered autoimmine illnesses /immunological diseases. For example: Severe neurological symptoms may be caused by autoimmune antibodies to the nervous system. But how on earth are you going to find out if its spirochetes or antibodies causing the problem without biomarkers.. Difficult spot to be in..

    That*s indeed all u can do, and you are doing a damn good job! :)
     
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  13. Esther12

    Esther12 Senior Member

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    I'm suspicious of the way some alternative Lyme people use the 'herxheimer' to explain a relatively prolonged worsening of symptoms. It should work like that, and it also means that whether people feel better or worse they can say 'great news!'

    Personally, I'd be really cautious with an sort of alternative treatment. If there's not good evidence it will do you more good than harm, why put your effort in to it?
     
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  14. trickthefox

    trickthefox Senior Member

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    As far as I know KDM isn't alternative, the treatments he's using at the moment on my specific gut bacteria are backed by lots of pubmed studies, however the belief that the biome is the cause of many neurological M.E. problems is yet to be proven. But even so, i was pretty p*ssed off that he just used 'herx' it felt like an easy way to brush off a question he didnt want to explore in more depth, I know my body, and I know what a herx feels like after 7 years of experimenting, what im going through is a progression, not a herx.

    Im currently not treating lyme @Esther12 but to be honest, im dying, and to date there is no concrete evidence about long term antibiotics for treating lyme, because of the politics and business/greed model of medicine. All I have to go on are anecdotal stories, and for lyme - there is a heck of a lot of positive ones - so I'd rather try than die
     
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  15. Esther12

    Esther12 Senior Member

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    I think KDM does count as an 'alternative' practitioner, but realise that there will be some controversy over this label.

    I understand and sympathise with your desperation @trickthefox but also know that it's hard to make calm and reasonable decisions about what is best when feeling like that. I wish I had better options to give you, but at the moment I'm not sure that they're there, and so it could be best to not put a lot of time and effort into pursuing various treatments.

    It's up to you of course, but I have found that a lot of patients come to regret having gone through a period of desperately trying things. (Although some find something that they say helped them). Good luck.
     
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  16. msf

    msf Senior Member

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    I´d be cautious about ANYONE who uses the term ´alternative treatment´ and especially ´alternative Lyme.´ It might be useful to ask yourself what those phrases actually mean.
     
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  17. trickthefox

    trickthefox Senior Member

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    The fact remains, the two times I was on antibiotics that cross the blood brain barrier were the only two times in the history of this illness I felt all my neuro symptoms melt away only to come back weeks later. I'm happy to peruse that path based on those results alone. I've tried just waiting around for the medical community to find a cure or for death.. It didn't suit my temperament
     
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  18. Esther12

    Esther12 Senior Member

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    To me, 'alternative Lyme' is a label for those who claim that the symptoms of a large percentage of those who fulfill the criteria for CFS are really caused by chronic Lyme, and that they have test which show this and treatments for these people, even thought their claims have never been showed to hold up when assessed under blinded conditions. As with all these sorts of things though, there will be grey areas, and people where is uncertain if they would count as a part of the alternative Lyme group or not. If others think that there's a better label for this group, I'm totally open to suggestions.
     
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  19. msf

    msf Senior Member

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    That seems like a very specific and not very useful definition - what if someone claimed (as some people do) that a lot of the cases of Alzheimer´s are caused by Lyme? By your definition, that wouldn´t be ´alternative Lyme´ but claiming that a lot of cases of ME are caused by Lyme is?

    I don´t think ´Alternative Lyme´ can be defined in terms of claims about ME, since some people may have good scientific reasons for such a claim, and others may not. For instance, if someone in Vermont (or somewhere else that is known to have a high level of Lyme) suggested that many of the ME cases in Vermont may actually be Lyme, would they be ´alternative´ in the same way that someone claiming that many of the cases of ME in Australia (or somewhere else where the presence of Lyme is still disputed) would be?

    I think we quickly discover that ´alternative Lyme´ is rather hard to define and is therefore not very useful. A more useful approach would be to take it on a case-by-case basis and try to work out how much a particular claim is based in evidence and how much is conjecture.
     
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  20. Esther12

    Esther12 Senior Member

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    We can be more specific by going into detail about the beliefs of individual practitioners, and this will provide more useful information, but I still think that there is value in a more general label of the sort I described, and it does seem that label does apply to a meaningful group of practitioners who have many shared beliefs. eg: A label like 'conservative' is useful, even if within that label there are a range of beliefs, and there are people who seem to fall on the edge.
     

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