Discussion in 'Fibromyalgia Main Forum' started by Bunchy, May 22, 2008.

  1. Bunchy

    Bunchy New Member

    Hi all,

    I posted this on the Lyme board but as you know it's not very active.

    I had to take a short course of Flagyl for an infection and I am three days into it.

    It could be coincidence but I've felt better than I have in a long while the last couple of days.

    I had thought if this continued I might try to see a LLMD (expensive and rare in the UK) to see if I could get a longer course of antibiotics.

    I've suspected chronic bacterial infection (not sure whether Lyme and co-infections or maybe even something weirder) for a long time.

    However I am going to have to stop the Flagyl (other infection gone anyway) because my stomach has swelled up like a balloon and I feel very nauseous and have diarrhoea. There is NO WAY that I could take these for more than a few days.

    I don't think this is a herx more a reaction to the incredibly strong antibiotic that my stomach doesn't like!!

    I was on 400mg twice a day but man are they strong!

    Is there a way that a doc could put you on a lower dose for a longer time? How do I go about asking for that and is it the right thing to do??

    I am taking a good probiotic by the way.

    Any ideas anyone?

    Love Bunchy x

  2. Rafiki

    Rafiki New Member

    That Doxycycline (sp?), which is what I take, with a good probiotic, causes less problems than Flagyl which is known to be difficult on the gut.

    I do not have a Lyme Diagnosis but have had mycoplasma infections, bladder infections, etc. which necessitated treatment with ABX. I responded very well to abx from the tetracycline family. (These are also the class of ABX used to treat Lyme.) I have sometimes enjoyed long periods of improved health after a long course of these ABX.

    Tetracyclines have been used long term since to treat acne for decades so more is known about long term use (the good and bad) than many other ABX.

    My doctor is willing to treat me with Doxy long term (3 mo. to start) based on the presence of mycoplasmas and my subjective improvement.

    Some ABX, Doxy included, have a modulating effect on the immune system. The improvement could be due, in part, to this effect. It is all a little unclear still but abx seem to be a useful approach for many.

    Long term Flagyl, not so much!!!
    Peace out,

  3. Bunchy

    Bunchy New Member

    I had heard Doxy was the best choice but does it target the *anaerobic* bacteria that cause Lyme and co-infections etc?? I know that the Flagyl does but clearly it's not for me - way too strong.

    Interesting to hear your experience. Do you "pulse" antibiotic treatment as some do here? I guess that would give the gut a chance to recuperate.

    So Doxy is gentler on the gut than Flagyl but is it as effective?

    I'm excited by this idea and want to follow it up but how in h**l do I get a UK GP to try me on this :-S

    Love and thanks,

    Bunchy x

    Edited to say the immune modulating effect also interests me as I have autoimmunity issues that may benefit from that effect.

    [This Message was Edited on 05/22/2008]
  4. Rafiki

    Rafiki New Member

    Doxy is the abx of choice for mycoplasma and Lyme. It is effective against cell wall deficient bacteria and Lyme.




    ETA everything I forgot

    I am pulsing 1 mo. on, one mo. off.

    People with a variety of auto-immune conditions, from MS to Scleroderma, have benefited from the immune modulating effects of ABX.

    Early days, though, early days. This is why I find it comforting that Tetracyclines have been used, long term, for such a long time.

    Re the doctor situation. I found a woman doctor, a friend of a friend, who is a human being first and a doctor second in our relationship. Big help! Not necessarily easy to arrange.

    Finally :~) why not Google the side effect profile of both ABX. They are very different.

    [This Message was Edited on 05/22/2008]
  5. Manaleon

    Manaleon New Member

    The nausea and other reactions you get while on the flagyl could be disulfiram-like effects, if you're taking ANY alcohol while on Flagyl. Disulfiram-like effects mean nausea/vomiting, diarrhea, even loss of consciousness. Remeber not to take any alcohol, not even vicks or something like that, while on Flagyl.
  6. Bunchy

    Bunchy New Member

    What dose of the doxycycline do you take and do you take it once or twice a day with food?

    What is it helping you with?

    You are lucky to have found a good doc - it's going to be next to impossible for me and even if I find one, it's doubtful I will be able to afford him/her.

    I'll see what info I can find on this board about the subject and print out relevant stuff to show my GP.

    Love Bunchy x and thanks!
  7. Bunchy

    Bunchy New Member

    Thanks for advice, I don't think I am ingesting anything containing alcohol or similar but thanks for the warning.

    Love Bunchy x
  8. hopeful4

    hopeful4 New Member

    When I read posts like yours, I'm struck by how different we all are in our response to medications, and I'm reminded that we all may be treating for a variety of different infections.

    I've been treating for chronic lyme disease since Dec. '05, and have been on many different antibiotics, and combinations.

    Flagyl is used to treat the cyst form of lyme. When I first took it, I was on 500 mg. once every 3 weeks! That was along with other ABX.

    I'm on a different regimen now which includes one week on and one week off Flagyl. I take 1/2 of the tablet, which is 250 mg., 1x/day. It is generally a harder week for me than the week off.

    Some days I cut back to 1/4 dose, some days I just skip.

    As far as being treated long-term on ABX, it can be very challenging! The most difficult time was definately in the beginning of treatment, when herxing was at its peak. At that time I worked closely with my doctor, who helped me moderate the herxing by cutting back on dosages, or by taking a week off entirely.

    I think, first and foremost, that you must identify the "chronic bacterial infection" that you have suspected for a long time. The identity of the infection/infections will dictate the treatment that will be most effective for you. A shotgun approach will not.

    If you suspect lyme disease then yes, it would be best to see an LLMD and be tested. In the US the most reliable testing is NOT ELISA, it is the IGENEX WESTERN BLOT. They have a website and you can contact them to see whether they can test you from the UK. They are very helpful.

    More on lyme for you:

    Diagnosis is clinical, not based solely on tests. This involves a lyme aware doctor who will take into consideration your history, symptoms, possible exposure, and labs.

    Successful treatment involves more than ABX alone. An integrated approach individualized to your needs is best for most people. This could include diet and nutritional needs, treatment of hormone imbalances, other tick-borne infections, other infections (such as mycoplasma, HPV, EBV, chlamydia pneumoniae, etc.)

    There are also helpful alternative approaches.

    I recommend reading "The Lyme Disease Solution" by Dr. Kenneth Singleton; "Healing Lyme" by Buhner; and "The Top 10 Lyme Disease Treatments" by Brian Rosner.

    Well wishes,

  9. Mikie

    Mikie Moderator

    For a chronic mycoplasma infection. I had been taking probiotics for years prior to the ABX, so I had a healthy gut. I do not understand why docs do not tell patients to take probiotics as preventive medicine and especially when patients take ABX.

    Use a good probiotic, one which will not break down in the stomach so it can colonize the gut. It should have high numbers of several strains of "good" bacteria. Probiotics should not be taken with ABX. They should be taken several hours after taking the ABX.

    Love, Mikie
  10. greatgran

    greatgran Member

    Not sure why but antibiotics help me. The only time my doc will give them is when I have a sinus infection.

    I ask for long term , at least 6 wks, explaining I felt so much better when taking them , he said it was due to a decrease in inflammation.

    I did get a 20 day supply last wk due to a sinus infection so that will get me up and going for awhile.

    God Bless,
  11. Rafiki

    Rafiki New Member

    I've noticed the positive effect of abx (and extreme negative effect of some -- sulfa, bactrim...) since I first got ill in 1979.

    Chronic UTIs provided opportunites to be treated with long term abx in the early days. I credit a long course of a useful abx with a long period of semi remission during which time I could push and crash my way through a semi normal, if very difficult, life.

    I hope you can arm yourself with enough information to convince your doctor to explore this avenue with you. He/She seems aware of one of the reasons why they might be helping you. It could be that you simply need to engage the doc. in a more focused conversation where they really think about what you are proposing. I would probably start by bringing research which backs up their position (you're a smart doctor:) and supports long term abx use.

    I am as concerned as anyone else about the overuse of abx. In the past I have had an infection which was responsive to only one existing antibiotic. Antibiotic resistance is a very serious issue. I have never, in my life, taken abx for a cold or flu and always waited for the results of a culture before taking abx. Until now. If people with acne are treated with long term tetracyclines I see no earthly reason why people with a disabling illness cannot be treated with the same class of abx.

    And, of course, everyone should follow Mikie's advice re probiotics!

    By the way, I do not "herx." I am treated with full dose abx which I am most comfortable with as abx resistance is most likely to develop following low or intermittent dosing. I realize that it is unavoidable for some but I am relieved not to be among them.

    Peace out,

    ETA Bunchy!

    [This Message was Edited on 05/24/2008]
  12. Bunchy

    Bunchy New Member

    I felt deathly tired for three days after I stopped the Flagyl. I feel better again today.

    I agree that I would need the support of an Igenex test and to research more thoroughly on AB's first BEFORE approaching my GP.

    I am a bit wary of long term AB use now though because I had such horrible after effects with only three days worth, albeit at too high doses.

    I'll have to wait a loooong time before I can afford a LLMD in the UK - we're not exactly rich :(

    I'll keep looking into it all.

    Thanks again,

    Love Bunchy x
  13. Bunchy

    Bunchy New Member

    Yesterday I answered some other replies posted to me on this thread.

    I think one was from Nicola, another from Suthherngrl.

    Those posts along with my response were deleted.

    Anyone know why?

    Love Bunchy x
  14. Mikie

    Mikie Moderator

    On the ABX itself. The Doxycycline I took does not kill the bacteria outright. It keeps them from being able to invade healthy cells in the body. As the bacteria kill their old host cells, they find themselves unable to invade new ones and "starve" to death in the bloodsteam.

    Whether one experiences a Herx often depends upon how large a dieoff occurs and how efficiently one's body is at excreting the dead, toxic pathogens. If there is too much buildup of toxins from the dieoff, the body will purge/detox and one will experience a Herx.

    Love, Mikie
  15. Mikie

    Mikie Moderator

    You can also use colloidal silver. It kills bacteria, viruses, and fungi.

    Love, Mikie