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ME/CFS or lyme

Discussion in 'General ME/CFS Discussion' started by Marky90, Dec 5, 2015.

  1. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Hey guys!

    As I am starting rtx-treatment i a month,I want to be reasonably sure that I can`t have lyme (as rtx. the would be a bad idea ,surely).

    I have zero neurological symptoms other than bad concentration, can you have lyme still?
    Can not remember any tick bites, nor subsequent rash

    ME started with exercise intolerance.

    Thoughts?

    Thanks!
     
  2. msf

    msf Senior Member

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    Fight!!!

    I think you will find that people on this forum disagree somewhat about this. I think even the IDSA would say that you can have Lyme without neurological symptoms, but they would probably expect to see oligoarthritis. ILADS would say that Lyme has many different presentations (it has been called ´The Great Imitator´). Why don´t you contact an IDSA doctor, and an ILADS one, and see whose opinion makes the most sense to you? Or just research the two positions yourself? One thing I wouldn´t do is trust the collective wisdom of a forum, with, as far as I know, no LLMDs on it.
     
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  3. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Right, I have tried to make up my own opinion, but it seems like there`s just a lot of opinions about what`s possible, with not much real data to back up either side..
     
  4. msf

    msf Senior Member

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    Well, there is quite a lot of circumstantial evidence, but little direct evidence, basically because it is hard to culture Borrelia. One experiment I would like to see done (but which won´t be done) is to get 100 people who have ICC ME, and see how many are positive for Lyme by xenodiagnosis. The problem with this is that I wouldn´t volunteer for my own experiment, as I would be worried that the ticks they used for xenodiagnosis would not be entirely germ-free. In the absence of such an experiment, or improved culturing techniques, it will always come down to serological tests, which can´t be properly evaluated in Chronic Lyme because of the lack of a gold standard, i.e culture. The one exception to this I can see in the near future is the Stanford research project into gene expression in Chronic Lyme patients. If this can be shown to be the same as the gene expression in ME patients, it would be more (circumstantial) evidence that they are the same thing. Of course, the argument as to what Post-Treatment Lyme Disease Syndrome is will continue regardless, until either xenodiagnosis or culture is used to prove the people who say it is Antibiotic-refractory Lyme right.
     
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  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I suppose it is likely that some small percentage of patients diagnosed with ME/CFS, actually has lyme. However the two thirds responding to rtx so far seem to indicate that a large percentage does not have lyme, cause fram the patient stories i have read; people with active borrelia/babesia/bartonella get really really sick with rtx.

    Of course the phase 3-trial might show the response percentage to be lower.

    The gene expression study sounds interesting! Although a bit above my head.
     
  6. msf

    msf Senior Member

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    Really? I couldn´t find any medical reports of people with Lyme being given Ritux, except for one possible case, where there weren´t any noticeable side effects. I have also found a report of its use (without other immunosuppressive drugs) in patients with other major infections, again with few side effects. It does seem to be contraindicated in Coxsackie virus, HBV and HCV infection, though.

    I´ve forgotten, what criteria did Fluge and Mella use? When I say ME I am talking about the ICC.
     
  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    It`s only anecdotal, so not of much worth.. It was a mother who sent her daughter with diagnosed ME to OMI for rtx-treatment, turned out (apparantly) that she had active borrelia, babesia and bartonella.. And she`s now fightning for her life.

    Ive also seen a couple studies where nothing happened..

    Fluge and Mella used Fukuda-criteria, actually.
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)

    2/3 improve on ampligen too. Ampligen seems to have a positive effect on infections and probably lyme too. Its known to increase nk function in cfsme, cd57 nk cell is said to be low in lyme, ampligen may improve this cd57 nk numbers ? ?

    Just a thought??
     
  9. msf

    msf Senior Member

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    Well, although it´s anecdotal, it seems like a good reason to make sure what you´ve got before you get Rituximab.
     
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  10. msf

    msf Senior Member

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    I´m sure this has been discussed before, but could the fact that Scandinavia has an higher rate of autoimmune disease mean that Ritux will be less successful in other ME/CFS populations?

    Oh, and I think I´ve solved the problem with my xenodiagnosis idea: clone the ticks! That should get rid of the infections.
     
  11. msf

    msf Senior Member

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    Unless the TBIs are sexually transmitted in ticks too...
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    What scares me about rtx is its contraindicated in those with current/chronic infection and medicine seem to find it hard to 100% fully detect if one has a chronic infection .

    My situation i respond to both abx and avs and seem to get a lot of unknown infections be it cold/flu type things as well as shingles flares.

    I'm sure others are different with , trialling abx and avs and getting no positive responses. Another group of cfsers say they never get other infections , maybe rtx is suited to them.

    I think we are going to find one group will be autoinflammatory/autoimmune . The other group with chronic infections and immune exhaustion /deficiencies .
     
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  13. halcyon

    halcyon Senior Member

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    This is what I've been thinking. It would be really nice to have parallel trials going on in other countries so the results could be compared.
     
  14. BurnA

    BurnA Senior Member

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    Well if the prevalence of autoimmune disease is higher in scandanavia then in theory yes.
    But I would add ....


    Is the prevalence of me/cfs higher in scandanavia ?
    If yes this would indicate me/cfs is at least in some cases autoimmune.

    Even if me/cfs and or autoimmune diseases were 10% higher in scandanavia then the rtx response rate should only be higher by the same % at most. So it shouldnt impact results too much.
     
  15. Sidereal

    Sidereal Senior Member

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    Just shows you the extreme dangers of offering experimental treatments to a heterogeneous patient population with no biomarkers.
     
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  16. BurnA

    BurnA Senior Member

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    It does, but you would have thought that they would have tested for everything there before treatement.

    It's a big open item, what does one do in the absence of a biomarker ? I am sure if treatments get approved ( eg rtx ) people will be more than happy to accept treatment but who knows what the risks are without a biomarker ?
     
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  17. duncan

    duncan Senior Member

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    Perhaps this person WAS tested for Lyme and babs and bart and tested negative - but evidently had them.

    It would be interesting to know not only if she was tested, but how.
     
  18. Sidereal

    Sidereal Senior Member

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    Tested how? Borrelia tests are notoriously unreliable. As for Babesia and Bartonella, the situation is even worse. I don't think there are valid tests for any of these infections.
     
  19. Sidereal

    Sidereal Senior Member

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    Sorry, cross-posted with @duncan.
     
  20. Sidereal

    Sidereal Senior Member

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    There is bound to be a percentage of people diagnosed with ME/CFS who actually have active infection(s) of some sort. I'm surprised no one's died yet from RTX.
     

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