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Beaver gets Lymed. (Trimethoprim, Plaquenil?)

Discussion in 'Lyme Disease and Co-Infections' started by beaverfury, Apr 1, 2013.

  1. LHCTom

    LHCTom

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    One of the problems with Lyme is the spirochetes are able to find hiding places from both the immune system and antibiotics. This is common with other pathogens. If the Lyme spirochete is stopped with antibiotics before it widely disseminates, its not difficult to kill. Think about the Herpes 1 and 2 models. Once the Herpes virus gets inside your nervous system, its virtually impossible to kill since neither the immune system nor antivirals can get to it. The immune system and antivirals can stop an ongoing infection but then it returns later from its hiding place in the nervous system. The Lyme model is similar but with many hiding places and the more time the more disseminated. If you have not been treated in a while, the spirochetes come out of hiding and cause the immune system to cause inflammation causing a variety of symptoms depending on where the spirochetes go. When you take antibiotics, it typically kills all the accessible spirochetes. This results in an improvement in symptoms. But some hide waiting to return. So you stop the antibiotics and out they come. Until persistence is shown to be real, there will be no research searching for ways to address each hiding place. Persistence studies are badly needed. Different antibiotics are effective to varying degrees in extracellular places, the many intracellular places, pass through the Blood Brain Barrier kill Borrelia in forms without cell walls - the so called L-Forms, Cysts etc.. There has been some recent research that Borrelia may hide out in the Biofilms of other bacteria already in your body. If the spirochetes are able to hide inside Biofilms which are quite common in other pathogens, that's yet another hiding place. This is basically why so many antibiotic protocols are tried. One common sense based theory says that if you don't attack all the hiding places at once or in close proximity, you will never kill all the Borrelia. It may be possible that there are hiding places as in Herpes 1 and 2 that will never be cracked. This may be why its so hard to cure Lyme. It all depends on what hiding places are invaded. Getting to Lyme early minimizes dissemination to the many hiding places. Waiting till its highly disseminated is not good. That's why the lousy CDC 2T test the resistance to persistence studies is doing great harm. Write your congressman about forcing the NIH and CDC to revisit culturing - the gold standard and in human persistence studies using a culture. Until that happens, this nightmare will continue.
     
    beaverfury, merylg and sianrecovery like this.
  2. beaverfury

    beaverfury beaverfury

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    Thanks anniekim:hug:

    Sorry I can't help with your results, I am clueless too.

    We're all in need of very good doctors to interperet this stuff for us.

    My DNA pcr test came back negative, but I read that the CDC doesn't even recognize urine PCR tests as valid.
    And finding lyme DNA in blood doesn't seem easy as the spirochete enters tissue to evade the immune system as soon as possible.
     
    anniekim likes this.
  3. beaverfury

    beaverfury beaverfury

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    Hi Heaps

    It was a huge drama actually. Very complex for a cfs addled brain. Lots of papers, couriers and timing.
    I'm glad I did it though.

    In retrospect I would dodge the DNA pcr test from Australian Biologics which cost $900Aus!

    The Infectolabs tests cost $580Aus.

    Then there where other tests for Erlichia,bartonella,babesia,chlamydia,mycoplasma etc, and standard blood tests which I guess would have added up to another $600Aus. Some of these where done in Aus.

    I also got a fecal biology test done with bioscreen, Melbourne $328

    You need to be off antibiotics for at least two weeks with al these tests
     
    heapsreal likes this.
  4. leela

    leela Slow But Hopeful

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  5. GcMAF Australia

    GcMAF Australia Senior Member

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    A good source of knowledge from Lyme patients in australia are the face book pages
    Australia : http://www.facebook.com/groups/437460279620065/
    Victoria : http://www.facebook.com/groups/437460279620065/
    Wa : http://www.facebook.com/groups/waperthlyme/
    discussion of treatments etc
    Also
    http://www.karlmcmanusfoundation.org.au/
    http://www.lymedisease.org.au/

    There is a high level of activism and plenty of discussion. Heaps of support
    Lyme Disease is in Australia
    Possibly big time
    about 30 more people diagnosed every month
    Families have up to 7 people diagnosed positive
    There are world wide protests to occur up to May
    The Federal Government has set up a committee
     
    merylg and sianrecovery like this.
  6. sianrecovery

    sianrecovery Senior Member

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    Plaquenil is anti-inflamatory, and as such, is sometimes used in treating arthritis. Lots of people use it and are fine. I just got a big herx, which surprised me, because I can normally 'push through', but I couldnt that one. Having said that, I know others who are fine with it. When Fry prescribes it for protomxzoa, he starts people on the abx first, then adds the plaquenil in - sometimes at a low dose, even sometimes at X3 a week. I guess you'll experiment and find what works.
     
  7. beaverfury

    beaverfury beaverfury

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    Did your health improve on this treatment, Ema? Or on any other Lyme antibiotics?
     
  8. baccarat

    baccarat Senior Member

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    I wouldn't bother about conventional vs non. The real question is whether your doc has had real success with that protocol. I had never heard of Trimethoprim before, I hope it works for you. Plaquenil is widely used in Germany.

    We know that for chronic established Lyme most antibiotics don't work very well. Recent research I am aware of, quite thin actually, points to Borrelia behaving more like a parasite than a conventional bacteria.
    That may explain why Metronidazole and Tinidazole seem to work well and, unlike most other antibiotics, prevent Borrelia from mutating into cysts and hiding into biofilm whilst all other antibiotics are said to promote mutation.

    Having said that antibiotics are just one element of the equation. Usually other factors are important in recovering from established lyme.

    An additional consideration ignored by mainstream doctors. Ticks not only harbor borrelia and parasites that cause well known coinfections but also different and previously unknown parasites, pls see link below (indeed, personally I have had good results with the treatment mentioned in that link when antibiotics would not work any longer for me).
    http://www.lyme.no/index.php/gjesteskribenter/335-eva-sapi-phd

    As for testing whilst on antibiotics, Burrascano talks about it on page 4 of his guidelines.
     
  9. sianrecovery

    sianrecovery Senior Member

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  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  11. Ema

    Ema Senior Member

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    Yes, antibiotics have definitely made a big improvement in my functioning.

    I am still taking Tindamax and Azithromycin now and only went off the Plaquenil because I wanted to try Amantadine syrup instead.

    I also attribute the progress I have made to antivirals (Nexavir, Famvir, Acyclovir), the methylation supps and hormone replacement/support. I think that they all work together and once the burden is lessened on the immune system, hopefully it will be able to function independently again. That's my goal anyway!

    Ema
     
    GcMAF Australia and merylg like this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    You using amantadine for its antiviral effects or energy/dopamine effects?
    How is it working for u?
     
  13. Ema

    Ema Senior Member

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    I wanted to try it for both reasons but my doctor has been dragging her feet for some reason so I probably won't get it until my next appt at the end of the month. I should have just ordered the tablets but I really wanted to start with a lower dose. I'll report back!
     
  14. beaverfury

    beaverfury beaverfury

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    Filarial worms and helminths. Sounds like everything has a go while our immune system deals with lyme!

    I don't know of another critter thats carries so many nasty bugs in such a little body. Ticks must feel sick all the time!

    It's worrying to me when you say antibiotics would no longer work for you. That means they did at one stage ,but you're still not free of borrelia? Still not free of cfs- like symptoms?
     
  15. beaverfury

    beaverfury beaverfury

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  16. beaverfury

    beaverfury beaverfury

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    How long have you been dealing with lyme, Ema ?
     
  17. sianrecovery

    sianrecovery Senior Member

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    sorry beaverfury. I don't know why it doesn't work either. It was what he was saying about testing I thought was useful.
    Still, as for alternative medicine, in land of lyme, its a pretty fuzzy line.
     
  18. baccarat

    baccarat Senior Member

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    I didn't mean to alarm you or anybody else. Antibiotics were helpful at the beginning but then their effect diminished over time. I haven't tested for years the reason being that tests are expensive and not highly reliable.
    Listening to the experts it would seem one cannot eradicate borrelia from the body. So I'd rather focus on my immune response to the bugs. I think antibiotics are helpful in lowering the load but only a healthy immune system can keep the bugs in retreat on a permanent basis.
     
    sianrecovery likes this.
  19. Ema

    Ema Senior Member

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    I got diagnosed with Lyme about 18 months ago and I've been treating with antibiotics since then.

    I'm hoping to take a break this summer and see if my symptoms stay away.

    Ema
     
  20. Ema

    Ema Senior Member

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    Well, it actually turns out that the combination that you have been prescribed is a standard protocol for Lyme...just not in the US where I am because roxithromycin isn't available here. It's called the Gasser Protocol and seems to be more popular in Germany.

    Here is a thread that cites some studies:

    http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=33

    So long as you aren't allergic to sulfa drugs (like me!), I would probably give it a shot. Looks like there has been some success with it.

    Learn something new every day!

    Ema
     

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