Home Forums General Discussion Reactive Arthritis / Confuse? Flagyl Helps? Doc don’t buy it

This topic contains 25 replies, has 8 voices, and was last updated by  worldofme 2 years, 8 months ago.

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  • #454856
    worldofme
    Participant

    I hope someone can help me here, I am desperate and no where to go.

    About two years ago I came down with some sort of urinary infection. I was tested for chlamydiae & Gonorrhea (GC) before going on any medicine. Results, negative.

    4 weeks post exposure – started getting joint pain, prostatitis, mouth sore, burning eye, and ill feeling.

    Went to Infectious disease physician – he said this sounds like ReA. Reactive arthritis and it will go away. I wish he was right.

    Doc, decided to run testing for GC, Urine culture, HIV 1/2, EBV, CMV, RPR, CBC, ESR, CRP, CK, ANA, Rheumatoid Panel, and some infectious stuff.
    Results – Negative.

    My blood was spanking clean except high CK Total level. This is 8 weeks post exposure.

    Doc decided to give me Doxy 100mg for 30 days, Z-Pack for 30 days, and Cipro 30 days. I took all those throughout 5 month period.

    NOTHING HELP.

    Joint pain continue and eventually started causing Spine pain and stiffness along with neck pain.

    One year exactly, I ask my doc about Flagyl. He prescribe and I took it. WOW, Flagyl instantly gave me pain relief and decrease in symptoms. Dpc thinks I’m making this up and no way flagyl helps.

    I said what the hell it helps so I keep taking it on and off. Ok so at this point i’m able to control my pain.

    However, (present day 1 year and half) post exposure – I went to go see rheumatology who decided to do X-Ray and MRI of SI JOin – Negative, no inflammation seen.

    rheumatology is confuse and says I should take prednisone -> Sulfasalsaine -> TNF Blocker.

    I kindly told doc, FLAGYL helps. rheumatology says impossible and no such thing.

    Here i am today, all my blood work is negative except high CK level (600). rheumatology is asking I get EMG test done next week to rule out muscle disease.

    Over last two years I’ve seen 5 URologist, 2 Rheumatology, 1 ID doc. None of these guys are able to pin point or cause of triggering bacteria.

    Urologist have done prostate secretion for anaerobic and aerobic culture and my urine culture has always been neg.

    ON PAPER – I’m 100% healthy. But realty i am not.

    I feel weak, headaches, joint pain, fatigue, hip pain, wrist pain, mood swing and list goes one.

    Flagyl is only antibiotics that helps with all my symptoms but they come right back if I stop FLAGYL even for a day. So I decided to take PREDNISONE to see if it helps.

    Could anyone here help me out? How did this immune process start? Is there an active infection? Is this disease like an on switch type?

    I am confuse and I am not sure which doctor to see because none of them are helpful.

    P.S. Lately, I am having heart palpitation, and leg pain. I have appt with cardiology in few days.

    Prior to this I was health 30 year old man. I’m 32 now and this disease is not going away, it is progressing.

    I hate to go on TNF blocker.

    I don’t mind taking Flagyl for ever / Doxcy.

    My ID doc is thinking of trying bacterim ds, he says ReA / AS can be cause by klebsilla bacteria.

    MY ESR AND CRP has always being normal and no bacteria was ever found in my urine.

    What should I do?

    Thanks
    Ben

    #454859
    Forum Admin
    Keymaster

    Welcome Ben

    Just to let you and all newcomers know that first posts are required to be moderated before being visible. It’s a SPAM preventive measure. That’s why first posts can take a while before being visible. All posts after the first will go straight through.

    There is a notice to this effect on the forums front page.

    RBFV

    #454861
    worldofme
    Participant

    I’m currently taking prednisone to determine if this is inflammation. Prednisone has help but not 100%, however Flagyl seems to help more.

    Could I take Flagyl with Prednisone?

    #454862
    worldofme
    Participant

    My Doctors do not believe in Antibiotics as treatment for Arthritis & they say never heard of that before and its strange why Flagyl is helping.

    Any idea anyone, please?

    #454865
    SJJ
    Participant

    will your doc continue to prescribe flagyl? if so, why would you stop if it’s working? you could take flagyl with doxy and they work together…lots of protocols use both.

    #454866
    SJJ
    Participant

    also if you email this forum and ask for docs in your area that DO believe in antibiotics for arthritis, you may find the road much easier. they will send you a list

    #454867
    Maz
    Keymaster

    About two years ago I came down with some sort of urinary infection. I was tested for chlamydiae & Gonorrhea (GC) before going on any medicine. Results, negative.

    Do you know what type of chlamydia was tested? Was it just C. trachomatis? There are different strains.

    My blood was spanking clean except high CK Total level. This is 8 weeks post exposure.

    As you likely know, this is a marker for elevated muscle enzymes, which can be due to a number of things, including surgery/trauma/infection, heart attack, or the myositis rheumatic diseases.

    Doc decided to give me Doxy 100mg for 30 days, Z-Pack for 30 days, and Cipro 30 days. I took all those throughout 5 month period. NOTHING HELP.

    Did you notice any worsening of symptoms during this time that might indicate a herxheimer reaction? These were short courses of antibiotics, so sometimes with early worsening due to a “herx” it can lead one to think that there is no improvement when in fact it’s due to microbial die-off.

    Joint pain continue and eventually started causing Spine pain and stiffness along with neck pain.

    This is typical of ReA or Reiter’s (along with your other symptoms), which commonly affects younger males. Spondylathropies also affect the spine and sacro-iliac joints (which can also lead to shooting pain down legs due to nerve impingement, like sciatica).

    One year exactly, I ask my doc about Flagyl. He prescribe and I took it. WOW, Flagyl instantly gave me pain relief and decrease in symptoms. Dpc thinks I’m making this up and no way flagyl helps.

    Has any doc done a stool analysis? Did you see the thread below on parasitic rheumatism? Flagyl is both an antibiotic and an anti-parasitic medication. Parasites can, in some instances, also lead to rheumatic manifestations:

    http://www.roadback.org/forums/topic/protozoan-parasites-and-reactive-arthritis-aka-parasitic-rheumatism/

    https://en.wikipedia.org/wiki/Metronidazole

    I said what the hell it helps so I keep taking it on and off. Ok so at this point i’m able to control my pain.

    I kindly told doc, FLAGYL helps. rheumatology says impossible and no such thing.

    Hmmm…well, not according to the above link on Parasitic rheumatism!

    Here i am today, all my blood work is negative except high CK level (600). rheumatology is asking I get EMG test done next week to rule out muscle disease.

    This is a good step to take as part of a diagnosis of exclusion, just to rule out other potentials. Am sure by now they will also have ruled out Behçet’s disease?

    Over last two years I’ve seen 5 URologist, 2 Rheumatology, 1 ID doc. None of these guys are able to pin point or cause of triggering bacteria.

    Maybe it’s time to see a gastroenterologist to look for gut pathogens and celiac disease? Also to check for immunodeficiency issues, as some tests are indirect and do not look specifically for an organism but for the host’s response to an organism. If a person’s immune system isn’t working all that well then indirect testing can be “iffy.”

    I feel weak, headaches, joint pain, fatigue, hip pain, wrist pain, mood swing and list goes one.

    Has anyone done an endocrine work-up? If not, might help to sort out the mix of symptoms, as things can overlap and, quite often, a serious illness can knock out thyroid and other endocrines.

    Could anyone here help me out? How did this immune process start? Is there an active infection? Is this disease like an on switch type?

    Well, we can’t really provide definitive answers, just ideas for you to pursue, as we’re all just patients here, too. Hopefully, the ideas above can help a bit and others might be able to provide some things to consider, too. There are a couple other websites where the protocols involve the use of nitroimadazoles, like flagyl and tinidazole. See: http://www.cpnhelp.org and also http://www.arthritistrust.org

    P.S. Lately, I am having heart palpitation, and leg pain. I have appt with cardiology in few days.

    Chronic inflammation can affect the heart and you don’t seem to have measureable levels of inflammation, but it’s just smart to rule out any causes of palpitations. Thyroid and adrenals (hypothalamic, pituitary, adrenal axis), for example, can cause severe muscle pain, heart irregularities, mood swings, etc., and it could be a confusing mix of different things going on. For example, thyroid imbalance, celiac, and reactive arthritis with a triggering infection. A good first step you can take for yourself is to cut out gluten altogether, just to see if this helps.

    Are you using probiotics to help replenish your gut with beneficial strains of bacteria? Also, I was interested to read the other day about the use of colloidal silver drops for inflammatory eye issues, like uveitis, conjunctivitis, etc.

    If you let us know your location, we might be able to assist with an AP (antibiotic protocols) doctor, if that is what you’re needing.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #454870
    worldofme
    Participant

    Yes. He will continue to prescribe flagyl as longest I request. The reason I stopped and restart flagyl is one I want to see if Antibotics provided a true cure, this is not the case. Also on the weekend, I would like to have a beer or two to enjoy with friends. This you cannot due on flagyl.

    I live in PA. Please send me list of RA doctors that use arthritis.

    #454871
    worldofme
    Participant

    I was tested for Chlamydia & Gonorrhea of Urine using NAA DNA test. And C. trachomatis, C.pneumoniae or C. psittaci using IGG / IGM. Results: Negative. No post exposure ever detected. Nothing.

    – No heart attack, actually went to ER and they stated no heart attack. However, I am having palpitation now, have appt with cardio tomorrow.

    – You mention infection? What type? All my infection test have so far been negative.

    – What is Behect disease? Doc never said anything about this.

    – Doxy really didn’t do much other than temp stopping the urinary symptoms, but nothing to go home about.

    – However, Flagyl helped with UTI, prostatitis, and joint symptoms. However, these symptoms are mild they do not completely go away.

    – In the past I have tried Flagyl + Doxy – Helps, again short live. The stiffness in the back persist.

    – I have tried Cipro + Doxy – Help stopped stomach issues I had when all this started.

    – My infection disease doc has tested my immune system by checking all immunologic IGG, IGM, IGA (normal value) . Also has done Lympocyte Profile (This includes testing for CD3, CD4, CD 8, CD 19, CD 26 and CD4;CD8 ratio – All normal expect high CD4 count and CD26. Not too high slight.

    – Yes Endocrine testing was done. TSH profile and T3 and T4 all normal. Testosterone Level Normal.

    – As you see I was checking for all rhumatic disease, infection disease and nothing is out of whack, except the CK levels.

    At the moment I am having symptoms of prostatitis, joint pain, eye pain, fatigue, and general ill feeling.

    I have two option at the moment: Start flagyl again which will help my symptoms / less then symptoms but i will still have symptoms.

    or Start thinking about immunosupressive drugs.

    – I do not know what to do. Pref, I would like to keep taking Antibiotics because they do help with the symptoms BUT DOES NOT CURE ME.

    AS soon as I go off the antibiotics everything comes right back.

    MY question is, Could I have a Prostate infection cause by anarobic bacteria causing immune response? There is nothing in my urogential any doc has found??????????

    How long should one take flagyl for? This drug is nasty. I have prescription for 6 months. I have prescription for Doxy 6 months. And Cipro.

    Cipro causes really bad side effects so I try to avoid this drug possbile.

    How long should one take Flagyl + Doxy??? This helps with minor joint pain but no cure.

    I know my is bacterial cause has to be because I was fine before all this happen.

    Any help? I live in PA?

    Thank you for understand I’m all over the place in my typing. I’m just mad and angry why this is happening to me. I’m only 32.

    Thanks

    #454872
    worldofme
    Participant

    Yesterday, I was given a script for Bactrim DS, because I ask my doc to try some other meds. Has anyone here have luck with Bactrim??

    #454873
    worldofme
    Participant

    I’m taking Prednisone 20mg at the moment for a week for doc to determine if this is inflammation related or not. It has not help much. It’s help much as Flagyl did.

    How do I find out the cause of all this? Could bacteria hide in your prostate & cause immmune reaction?

    #454874
    jasregadoo
    Moderator

    Worldofme, Roadback Forum rules will not allow posting doctor names on the forum. If you’ll send an email to the following email address, with your location, a volunteer will send you a list of doctors who might be able to help you.
    apdoctorlists@roadback.org

    #454875
    frhorngal
    Participant

    Flagyl is intense…and very powerful- however, it can be extremely beneficial for certain parasitic and protozoal infections- if you have reactive arthritis from one of these, even if it’s an unknown one, and the Flagyl is keeping it in check, I would definitely investigate further- find a good infectious disease specialist- a LLMD or one who focuses on tropical/mosquito borne/protozoal infections and see if they can get to the root of your illness- if blood tests aren’t giving you the answers you need, you may need to get a comprehensive stool analysis- Finding a good functional medicine doctor, an open-minded DO, or naturopath are crucial- most traditionally trained doctors won’t order the ‘right’ tests- (mainly because of insurance, but it could also be because of lack of knowledge/info about them) if Flagyl is working for you, you need to find a doctor who believes you and will work to help you get better. I would just make sure you are taking good care of your gut while on such a powerful abx- you don’t want to add c.diff or SIBO to your journey back to wellness- eat lots of fermented foods and take good quality probiotics-

    RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

    #454876
    Maz
    Keymaster

    By “stomach issues,” what type of issues do you mean?

    There are so many organisms that can trip up the immune system and I’m wondering if anyone checked Lyme and associated coinfections, h. Pylori, mycoplasmas, and as mentioned above a stool analysis to look for other organisms, like klebsiella and parasites. You’ve really run the gamut on testing so far, so can only imagine your frustration, but hopefully the work you’ve done thus far will help narrow down the field.

    Yes, Flagyl is nasty, but the combination protocols on the cpnhelp.org site are designed for long term use. Really need to protect the gut and liver with Flagyl, which has a tendency to break up gut biofilm and release otherwise benign enteric flora/fauna. Some people get quite severe candida overgrowth in the gut from it and so taking copious amounts of probiotics are a must. There are also supps to help protect the liver, which are shared often here (e.g. Milk thistle, lecithin, curcumin, NAC, ALA, etc).

    Antibiotic therapy doesn’t promise “cure,” and most people, once in remission, prefer to remain on a maintenance dose to keep symptoms in check. Dr. Brown often said that the average time to reach remission was 2-5 years. We’re talking “slow therapy” here.

    Not all rheumatic diseases have verifiable labs that can be run to definitively rule in or out a particular type. E.g. Spondylarthritides can present with the HLA B27, but not in every case. Some rheumatics are seronegative and suffer symptoms with a paradoxical lack of any inflammatory markers. In your case, the elevated muscle enzymes, CD4 and Cd26 are your only clues. Was an ANA run?

    You’re in PA and if you send an email to the address jasregadoo added above, you can obtain a list of AP doctors for your state, which is a state that is fortunate to have some decent ones. Getting a definitive diagnosis may take more work. What does make sense is to keep going with a treatment that is working, but also to do whatever possible to get the immune system healthy again. The goal is to get the pathogen load down, but also to work in immune health to keep the animals in their zoo cages.

    Yes, it’s not fair at your age to be suffering like this. It’s horrendous at any age and we can all equate to differing degrees, so you’re not alone. Don’t lose hope and do what you can to support your body back to health…an occasional drink isn’t bad, but do what you can not to try to keep up with your friends on the weekends. The liver is a major detox organ, so it’s badly needed to help metabolize bug toxins, medication toxins, food and environmental toxins.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #454877
    Linda L
    Participant

    Worldofme,
    How much of Flagyl have you been taking and for how long?
    Linda L

    RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
    AP from April 2014 till August 2015. No luck.
    Current medications: Natural thyroid, Mobic, LDN, supplements incl. milk thistle, NAC, vitamins and minerals.
    MTHFR heterozygous

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