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Confused about Lyme

Discussion in 'Lyme Disease and Co-Infections' started by AdAstraPerAspera, Dec 26, 2017.

  1. AdAstraPerAspera

    AdAstraPerAspera

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    Oh thank you Learner that's a really good explanation! I've been told I'm homozygous for the MTHFR genetic deficiency thingo, and I know that affects methylation, so I've been taking glutathione daily. The NutrEval test sounds like a good idea. Just need to save up and decide which tests to get! I'll do some more research to find the right protocol for me. :)
     
  2. AdAstraPerAspera

    AdAstraPerAspera

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    Wait so, it's probably a real positive?

    and thank you for all the resources, this is amazing - I've used iHerb before and it's so great. I didn't think of getting B12 there though! I'll order some, my sister has started trying it and it's helped her a lot. You're the best.
     
  3. Learner1

    Learner1 Forum Support Assistant

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    Yes, definitely learn more about the methylation cycle and do the NutrEval test if you can - in many places they have a discounted pre-pay program which makes it more affordable.
     
  4. CCC

    CCC Senior Member

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    It's almost certainly a real positive. I've never heard of a false positive from that lab, but there have been lots of false negatives.

    If you go down the Buhner path, you should

    You are very fortunate to have a Lyme literate GP. Keep him in the loop because some people do need antibiotics to get better. Even if you do, it will be easier

    I have also found the LymeNet forum (http://flash.lymenet.org/scripts/ultimatebb.cgi) to be really useful.

    Finally - did you say you are starting uni this year? That would make you the same age as my son. I'm impressed you finished year 12.
     
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  5. denlander

    denlander

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    The bacteria Borrelia Burgdorfi is a spirochete treatable for at least three by oral doxicycline or if that does not work by intravenous rocephin. Try and find a receptive physician to prescribe treatment. Then we would proceed to other approaches or diagnoses. Side effects of doxicycline are relatively small. Allergic effects are unusual.
     
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  6. Learner1

    Learner1 Forum Support Assistant

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    My daughter has Lyme. She was on the antibiotics you mention for 8 months a couple of years ago. She still has it. Our doctor, who is very familiar with all current Lyme thinking and clinical experience, says that they've learned no one really gets rid of Lyme and they found that even having patients on antibiotics for years, it was still there.
    The only thing I've seen anywhere that helps a lot is 10 pass ozone, done intensely for awhile, and then a maintenance dose every 2-3 months.

    What other treatments are there that get people their lives back?
    After IV doxycycline for 4 months (IV to avoid impacting the gut...), my microbiome diversity went down to 17%. . My daughter ended up with an overabundance of clostridium difficile, notorious for causing violent diarrhea.

    A disrupted microbiome is at the root of a long list of serious health priblems, including ME/CFS.
     
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  7. Judee

    Judee Senior Member

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    Mel9 likes this.
  8. Learner1

    Learner1 Forum Support Assistant

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    Thank you. I'm familiar with it. ;)
     
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  9. Mel9

    Mel9 Senior Member

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    Antibiotics did have a bad effect on my gut for a short time, but now, a year later, with good diet, anti- fungals and probiotics (and avoiding milk products) I believe it has stabilised to a new healthy biodiversity free of Clostridium difficile and other pathogens.
     
    Learner1 likes this.
  10. Learner1

    Learner1 Forum Support Assistant

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    But, are you rid of Lyme?
     
  11. Mel9

    Mel9 Senior Member

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    Good question! I think it is still hanging on a bit

    But I do feel much better
     
  12. Learner1

    Learner1 Forum Support Assistant

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    From everything I've seen, its likely still there. So, what will you do when it flares again? More antibiotics? Maybe with dapsone? (I'm not trying to be impertinent, but as this is in my family, trying to understand long term planning.)
     
    Mel9 likes this.
  13. Mel9

    Mel9 Senior Member

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    There is a lot of trial and error involved . You and your doctor need to try treatments, wait a while and make decisions on the basis of how you feel, both in terms of the Lyme-like malaise and the ME- like PEM.

    Example: two daily antibiotics, vit B12. CoQ10, cumin tea, Basica alkalising powder plus a pulsing ‘cyst buster’ were essential for my well being for over 18 months, although I still was a long way from feeling normal (I was very fit before I became ill).

    Two months ago, My LLD added another antibiotic plus a few supplements and sauna sessions to increase the efficacy of the antibiotics. I was just starting to feel really well but then The nurse at My local GP decided to stop my weekly B12 injection and I was instantly depressed, miserable and found my PEM worse again.

    Then, reading PR (so many intelligent posters!) led me to discovering sub-lingual (under the tongue) B12 which caused almost instant improvements in my health again.

    From being unable to walk 100m without severe PEM, yesterday I walked 3km (Very slowly! 90 year olds were power walking past me).

    But I am spending the morning in bed in case of a sneaky PEM ‘surprise’.

    I think that once you have this Lyme-ME/CFS. ‘thing’, you may never be able to stop Pacing. However, in my case, antibiotics ( whether bacteriostatic or bactericidal) have been essential to get to a state where I feel happy to be alive.
     

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