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Doxycycline, benefits, or otherwise, from use?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Andy, Feb 15, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    I've been asked by a researcher who isn't a member of the forum about anecdotal benefits, or otherwise, of doxycycline, so if you've had experience of taking it then please post below.

    Also, if anybody knows any research papers on use of doxycycline for ME then please also post with that info.

    Thanks :)
     
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  2. EzzieD

    EzzieD Senior Member (Voting Rights)

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    My anecdotal n=1 experience: I was treated with doxycycline in late 2015-early 2016 after going to a private doctor to investigate whether I might have Lyme disease (I had been bitten by a Lyme tick before I fell sick in 2005, had the distinctive bullseye insect bite, but didn't know what it was at the time and just shrugged it off). When I later learned about Lyme, my NHS GP brushed me off when I asked about the possibility that my severe, incapacitating illness (diagnosed on the NHS as 'CFS' - I'd had ME in the 1980s but was one of the lucky few who recovered - or at least, had a long remission until 2005) might be Lyme - he told me Lyme disease didn't exist in this country!

    After six years of getting much worse, an NHS consultant granted me an ELISA blood test. It came back normal as they always do after several years of illness progression (the only time ELISA is able to show active Lyme infection is when one has been recently bitten, and even then it's not reliable) and I was left to it.

    Finally I was able to go to a private doctor who had Lyme experience, who diagnosed me by clinical history of bullseye bite and subsequent classic 3rd-stage neurological and cardiac Lyme symptoms plus a Western Blot blood test (there are currently NO reliable tests for Lyme, but the Western Blot is at least better than ELISA). The Western Blot was not positively conclusive but showed Indeterminate rather than Negative. I was put on doxycycline for 12 weeks.

    After doxycycline, my condition improved dramatically: for the first time in years I felt less-unwell enough to get around the house instead of being semi-bedridden and could go for an occasional short gentle walk instead of being too sick to go anywhere except in a wheelchair. However, it was not a total cure - I reached a plateau I haven't risen above since. Maybe I had Lyme and treating it made a big difference, but the underlying ME is still there.

    My private doctor agrees that it's likely I have more than one condition, a concept the NHS seems unable to grasp. (She also diagnosed me with Ehlers-Danlos, based on my scoring 7 out of 9 on the Beighton scale, but that may be irrelevant, who knows.) In any case, I'm eternally grateful to the one doctor who took me seriously and treated me with something that afforded a hugely welcome improvement, and would strongly recommend anyone who recalls a bullseye-shaped insect bite in their past to look into this.
     
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  3. Wonko

    Wonko Senior Member (Voting Rights)

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    I've had the bullseye at least twice, but both times were well after ME symptoms were apparent, several years. I used to walk in the countryside whenever I could.

    I've never been to a doctor about it coz it was over a decade later before I knew that particular shaped rash had any significance.
     
  4. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Might be worth following up, just in case treatment might lead to relief from at least one set of symptoms! Yes, I spent as much time walking in countryside as I could too, but if I become well enough to do that again, am gonna invest in anti-tick repellent spray this time. Once bitten twice shy, ha ha.
     
  5. duncan

    duncan Senior Member (Voting Rights)

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    I have been on the tetracyline group many times, more recently with minocycline because it's cheaper, but I have had doxy several times, often for protracted periods.

    For me, at least, it results in a familiar pattern of sequela severity: At first there is an easing of symptoms, but after two or three months, symptom severity returns to customary levels. If on doxy longer, symptoms worsen - to a point where I have been forced to abandon treatment or switch to an alternative protocol.

    I have read somewhere, I seem to remember (ha!), that doxy had antiinflammatory properties, but not sure if Im confusing with something else. I know, of course, it is front line for Lyme & Company. There seems to be an endless stream of light-weight studies trickling in that it can be used for late stage neuro Lyme to the same effect as Rocephin, but that always smacked to me as being little more than a cost-saving exercise.
     
  6. EzzieD

    EzzieD Senior Member (Voting Rights)

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    I've read in the past that oxytetracycline has antiinflammatory properties, and as the two antibiotics are in the same family, maybe they both indeed share similar antiinflammatory qualities? A quick search turned up two examples: Doxycycline: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC253774/ , Oxytetracycline: https://www.karger.com/Article/Abstract/475983
     
  7. roller*

    roller* Senior Member (Voting Rights)

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    actually, i believe when bitten by a tick, borrelia may be the least of your problems. they have much worse rubbish on board.
    doxy is doing much more (wolbachia, helminths) and i also consider it one of the most important drugs.

    when i took doxy for the first time, some 5 cm round powdery white patch appeared on the right wrist. was helminth/parasite-related.

    the problem:
    there is an ugly nausea, which starts after 6 days (100mg/daily). seems set in stone. then, this persists, and trashes half a day and more.
    sometimes i start "hyper salivating" and just continue swallowing it, what often helps to prevent vomiting.
    i had similar gross nausea/vomit effects with other "chlor" drugs (levamisole, DEC). meantime, i can take it very well.

    the somewhat downside:
    i think, it has to be combined with other abx/supplements, since a lot of the/my bad side effects (of doxy and ME originate in the gut).

    merhaba, btw
     
  8. Tia

    Tia Senior Member (Voting Rights)

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    I was taking it as an anti-malarial whilst travelling in Asia around the time I got ill (my illness is progressive so hard to pinpoint the exact moment it started).
     
  9. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    "Lyme disease not in this country". Canadian authorities used to say that, even though Lyme disease was being found in the northern US. Seems those Lyme ticks didn't have passports to come to Canada, at least for a while.
     
  10. duncan

    duncan Senior Member (Voting Rights)

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    You pretty much will find some form of Borrelia anywhere birds fly to. It's just a question of getting from bird-host to human; most areas of the world have a documented intermediary for that, too.

    ETA: I know you know that @DokaGirl. :)
     
    Last edited: Feb 15, 2019
  11. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    I break out in a rash when using Doxycycline so I can't use it or any other antibiotics in that family.
     
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  12. duncan

    duncan Senior Member (Voting Rights)

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    Aren't you curious to see what would happen if you got tested? What if you've developed Lyme on top of ME? What if you had a bullseye but didn't see it years earlier? I'd try to get my hands on a couple weeks of doxy BEFORE testing, btw, if you ever decide to get TBI tested. That's one of the purported benefits to doxy, ie, it's been known to evoke a positive response in people with Lyme who might otherwise have tested negative.

    Unfortunately UK testing means - typically, I think - just a C6. No Western Blot as part of the standard testing protocol, unless they've changed in the past couple of years. All the more reason to eat some doxy first?
     
    Last edited: Feb 15, 2019
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  13. Wonko

    Wonko Senior Member (Voting Rights)

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    No, not really, the time for that was years ago. Even once I found out about lyme and considered it as a candidate the NHS knew squat about it, at least at GP level, and I rapidly realised that even if I could get tested the tests were worthless, nearly as worthless as the treatments.

    So no, not something I have ever seriously considered.

    As to doxy, I have no idea how to source it.
     
    Last edited: Feb 15, 2019
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  14. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Yes, exactly.

    Either health authorities in some countries (or many), have compartmentalized thinking, or just don't want to spend the money dealing with this issue.

    An issue in a rather lengthy list.

    Interesting how compartmentalized thinking is fairly common.

    E.g., the smoking section in restaurants. Totally fine, right? The smoke won't travel past that invisible barrier.

    Just like birds carrying lyme ticks won't cross borders.

    Or, like padded seats in school buses, but minus seat belts, will protect kids in roll-over or T-bone accidents.
     
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  15. edawg81

    edawg81 Established Member

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    Before my onset i had relaspe remitting pvfs symptoms (prob mild ME but didnt know at the time) and migraines. Taking doxy for ance really helped. I started to go to the gym more and felt more productive. I’d say it took me from 85 to 105%. Eventually i stopped due to gi sx. After my big ME onset, when i was closer to 40% functional it didn’t help, so i stopped it. An igenex wb came up positive though. In hindsight with mild ME the anti inflammatory properties prob helped.
     
  16. Rosie

    Rosie Senior Member (Voting Rights)

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    Doxcycline was very good at opening chronically blocked inflamed sinuses.
     
  17. Andy

    Andy Committee Member & Outreach

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    Bump, anybody else have any experience with doxycycline?
     
  18. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Thanks for asking this question on behalf of the researcher.

    Doxycycline is my first choice of antibiotics when I have a sinus or other infection.

    My ME was virus and acute onset. Since it started over 30 years ago I have had a succession of tonsillitis, chest, sinus and other infections. If steaming and washing doesn't clear the problem I end up with AB's and I've taken a number of different ones.

    The usual pattern was to have an infection, be sick for weeks, take AB's, feel profoundly worse (weaker, sicker) and even very depressed for a week or two, then slowly return to "ME normal" in a few months.

    Doxycycline is the only AB that clears the infection without causing depression or worsening of symptoms. It has the unusual benefit of providing me with a week or two of better functioning at the end of of course.

    The effect however only works with 8 tablets over 7 days (2 on the first) and if I take more than that and try to lengthen the good effect it wears off as normal. I talked my GP into a months supply once but the "good effect" wore off after 10 days and I returned to "ME normal".

    This Doxycycline effect only started 10 years or so ago. It doesn't work with other AB's like Amoxicillin (which still make me feel terrible). I can't remember if I ever took Doxycycline previous to noticing the "good effect".
     
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  19. katejones

    katejones New Member

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    Horrible experience to the point where I am not willing to take doxycycline ever again, or any drug in that family, no mattter what. Never felt so nauseous and also felt very sick (and very itchy, with crawling skin, but without a rash).

    The nausea got even worse when I was laying down, yet I was too exhausted to sit up. It was completely impossible to find a somewhat comfortable position.

    Called my GP on day 2 begging (telling) him I quit. Felt much better the day after.

    (Doxy for kinda bullseye reaction to what I'm 99% sure was a flying wasp like insect that I sat on top of. Found a flat one. Never saw a tick, no bite mark in center either, and butt cheek is a weird location for a tick. Bullseye never grew. No Lyme symptoms before or after. Over a year ago now I think.)
     
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  20. Hutan

    Hutan Moderator Staff Member

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    The first time I had doxycycline, pre-ME, it was a long course for malaria prophylaxis. It seemed like miracle stuff. I wasn't ill, but I felt much better on it, my skin cleared up. However, I think multiple long courses wrecked my gastrointestinal flora, over the years I went from being able to eat anything with no ill effect to often getting food poisoning. I was often eating pretty dodgy food though.

    One time I took a tablet without water and it temporarily damaged my throat and further down my oesophagus. It was really very uncomfortable, I had trouble swallowing even liquid for maybe a week. If you take doxycycline, preferably take the ones with the gel coating and always take them with plenty of water and while upright. It's a simple thing to do and prevents a lot of pain.

    Anyway, to get to the question of does doxycycline help ME? When I and my two children got the symptoms of ME, a course of doxycycline was something we all tried quite early on. I don't believe it helped any of us, although of course it is difficult to tell when you don't know what might have happened had we not taken it. There was certainly no miracle cure.

    I have had a couple of courses since, again for malaria prevention and again, there was no noticeable effect. I can't rule out a minor benefit though as the times when I was taking the doxycycline I was also travelling - so perhaps a minor benefit might have balanced out the impact of extra exertion.
     
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