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Beaver gets Lymed. (Trimethoprim, Plaquenil?)

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

  1. Creekee

    Creekee Senior Member

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    Thanks for the update, Monsieur Beaver! Wish you were seeing a more solid improvement. Although mowing the lawn totally wowed me. Will you let us know what you decide about continuing abx treatment?

    Things you make me contemplate:
    - The up-and-down-ness. Hate this.
    - The lose-lose of treatment. Cooties are slowly killing us. Abx will damage us in other ways.
    - How tough it is to maintain perspective. You've convinced me to start a journal. Now (thank you!).

    If it helps to know you have company, I am walking in your footsteps. A bare week into abx treatment for long undiagnosed Lyme and cos. Full of questions and confusion, but pushing (bumbling!) forward. :cautious:

    Hope you'll keep posting your experiences, M Beave...
     
    beaverfury likes this.
  2. beaverfury

    beaverfury beaverfury

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    Thanks Creekee,

    My sixth month on Abx report is very positive.

    I have stabilised at a higher level of functioning for the last month. I haven't been this well, this long, for years.

    I can stand up all day and do chores. No more seeking out chairs all the time.
    The lack of oxygen feeling, ( Orthostatic intolerance?) where i would have to sit down to recover, is almost completely gone.

    I have moderate amounts of energy now which i can manage evenly if i stay within a sensible envelope.
    I must have spent half of the last four years sat in a chair, beanbag, bed which seriously interfered with my plans...so to be able to get a few things done is great.

    My cognitive symptoms have improved. I am able to put a little more effort into mental tasks. (For me, this is manly art/painting).
    My nervous system is a little more resilient around people and social occasions. In the event that i do overdo myself in socializing i am able to bounce back quicker.

    My gut feels more robust. I am hardly aware of it if i stick to a good diet. I am able to tolerate the odd coffee now and again.

    I am actually considering graded exercise therapy to gradually adjust my body back to fitness. I think i am finally within the range of that biopsychosocial Holy Grail!
    I could do it myself but going through official channels may give me access to free treatment, and left to my own devices i tend to be erratic in effort output.

    Residual symptoms are - lots of strange tight muscles, mainly in my neck,shoulders and chest which lead to mild migraine like headaches every fourth day. It's not severe, but does piss me off, and i generally lose a day in head fogginess.
    Muscle tightness sometimes makes sleep difficult.

    Poor memory. Even though my all round cognitive ability has improved.

    Still have a low level wired, tense mind and body most of the time, though there have been improvements in this area also. My all time most hated symptom. The one that affects rest & relaxation, sex, enjoyment of sensual pleasures.

    I can't speak of PEM because i haven't overdone my exercise capacity for quite a while. This is good news because it used to happen all the time without much provocation.

    The bad news is if i keep improving like this i will eventually have to go back to work and lose all the secondary gains i have fought so hard to obtain in the last four years;)



    I realize it could all come down like a pack of cards, but really i feel like i am on more stable ground now and i'm confident of improving slowly. Even if i don't reach full recovery I want more and more functioning so i can better deal with the world out there.
     
    Valentijn, maryb and sianrecovery like this.
  3. beaverfury

    beaverfury beaverfury

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    I shudder to ask... How goes your treatment, Creekee? Early days are hardest.
     
  4. k-AUS

    k-AUS

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    That's very inspiring to hear that you are slowly recovering. Being only two weeks into abx and already feeling (more) crappy, at least there seems to be some light at the end of the tunnel :)
     
  5. sianrecovery

    sianrecovery Senior Member

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    Great news. Which abx have you used so far? Xxxx
     
  6. beaverfury

    beaverfury beaverfury

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    I did have some very unpleasant times in the first few months, but it's been worth the persistence.

    I hope it goes well for you. What medication regime are you on?
     
  7. beaverfury

    beaverfury beaverfury

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    Sian

    So far i have taken Plaquenil and Trimethoprim every day, and Roxythromycin and Ampicillin every alternate week.
     
    sianrecovery likes this.
  8. sianrecovery

    sianrecovery Senior Member

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    Fry tends to start people on plaquenil and doxy for protomyxoza....maybe your combo is knocking out some protazoans too. I couldnt make plaq work for me, too severe an initial response, buy I met others who've done well with that mix. Good on you mate - long may it continue xxxx
     
  9. sianrecovery

    sianrecovery Senior Member

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    ps did they explain they amp and roxy combo in terms of rationale? Am thinking of adding minocycline to the augementin I am already on.
     
  10. GcMAF Australia

    GcMAF Australia Senior Member

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    I am glad for the improvements people are having
     
  11. beaverfury

    beaverfury beaverfury

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    Thanks. I hope i keep improving. I would still feel robbed if i didn't get back to 90-100% health.
    Something in me still can't accept accepting this illness.

    The Roxy is part of the Gasser protocol http://www.ncbi.nlm.nih.gov/pubmed/7782115,

    I think the ampicillin is an add on for a four pronged attack on borrelia.

    Wiki- ampicillin - is a beta-lactam.
    Ampicillin acts as an irreversible inhibitor of the enzyme transpeptidase, which is needed by bacteria to make their cell walls.[1] It inhibits the third and final stage of bacterial cell wall synthesis in binary fission, which ultimately leads to cell lysis.

    A Jarisch-Herxheimer reaction may occur after initial treatment of a spirochetal infection such as syphilis with a β-lactam antibiotic.
     
    sianrecovery likes this.
  12. beaverfury

    beaverfury beaverfury

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    Surprise, surprise. Guess who has gone 12 months (nearly) on ABx and survived ?

    Yessir, that's right! Welcome back your old friend beaver with another installment of my 'incredibly boring lyme progress report.'

    To be brief, over the last twelve months i have definitely improved, but am still disappointed in my progress.

    I was a shocker before. I spent most of my days sitting down with zero energy. Now i'm on my feet for most of the day.
    My energy has lifted so that i can achieve a few menial things. All up, i'm suffering a lot less than i used to.

    However...... My functioning is still low level compared to a normal. And that frustrates me no end.
    I'm eager to resume my painting career and do some major masterpieces, but my brain wont co-operate.
    I'm eager to do normal stuff consistently like normal people do, and not have to worry about consequences... But not there yet. Pain and PEM are still my companions.

    I have noticed a recurring pattern of couple of good weeks followed by a couple of poor weeks where all my pain comes back and my energy and cognition drops back to... pathetic.

    I'm due to see my Dr soon and may get a switch up of some tasty new drugs. Maybe minocycline, tinidazole or doxy? Have to wait and see.

    It's been the best year out the miserable 4 1/2years, but still.... I would hardly call this living.

    Just between you and me-
    The little spirit flame that ebbs and flares in us to fight this disease is feeble in me at the mome.
    After 4 1/2 big ones, i'm getting tired of this. Even my fighting spirit has PEM.

    There's been relationship casualties, financial woes, healing hopes dashed bla bla bla .. You know the speech.

    The IACFS conference is heartwarming, but i do wonder how many years it will be before effective treatment reaches us? ..And to what degree my nervous system could recover anyway?
    This would be a good time to go into a remission- for about 5 years- come out the other side and pop a pill to recovery.
     
    bertiedog, justy, Sea and 6 others like this.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @beaverfury

    A year! Hard to believe--from the onlooker's point of view that is!

    Glad for you improvements, sorry that it is taking so long. But...Lyme "street wisdom" says it takes about 3 years and then ongoing maintenance.

    I took my firs abx for Bartonella yesterday, so I am impressed with your resilience.

    Best,
    Sushi
     
  14. Ema

    Ema Senior Member

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    @Sushi, good luck with your abx!

    I think it takes 3-5 years + the length of time you were sick and untreated honestly to make anywhere near a full recovery. Not all that time may be on abx but it really is a marathon...

    And if you aren't seeing *any* improvements in 6-9 months, you need to switch treatments/doctors/etc. It should be a gradual improvement (with periods of downturns of course) over the years.
     
  15. k-AUS

    k-AUS

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    Beaverfury,

    Are you on IV or oral antibiotics?
     
  16. beaverfury

    beaverfury beaverfury

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    @Sushi @Ema 3-5 years, huh? :ill: Far out.

    I wonder what sort of a person i will have turned into by then. Probably only have fur, feather or fins friends left.

    @k-AUS I'm liking that puppy. Seriously cute. What is it?
    I typed 'marmalute' into wiki and it come up with 'marmalade'. It's not a fruit preserve, so i guess it's some sort of husky?

    I am on oral antibiotics k-AUS. Azithromycin, plaquenil, trimethoprim, ampicillin at the moment.
    Due for a change soon.

    I'm also trying to incorporate more Buhner herbs. Cat's claw, resveratrol, andrographis etc.
     
    GcMAF Australia likes this.
  17. Ema

    Ema Senior Member

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    Malamute?
     
  18. beaverfury

    beaverfury beaverfury

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    Ha ha, Malamute! That's it!

    Hey! We're both awake at the same time! (Well, you're awake. I'm in a post breakfast conserve haze)
     
  19. Ema

    Ema Senior Member

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    Sort of awake. I broke my computer somehow and am irritated about it.

    So I am trying to meditate and am actually messing around on the internet on my phone. :)
     
  20. Valentijn

    Valentijn Activity Level: 3

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    That would be 25+ years for me to recover then, since I've had it for over 20 years now without treatment :p

    Admittedly, I'll be pretty happy if I can just get healthy enough to fully care for myself without struggling. And it'd be awesome if I recover enough to have a kid some day!
     

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