Home Forums General Discussion Bicillin LA / Rifampin / Doxycycline for PsA and Lyme

This topic contains 20 replies, has 6 voices, and was last updated by  GrandeMusic 3 months, 1 week ago.

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  • #461470
    GrandeMusic
    Participant

    Hi guys!

    I’m a professional musician (www.jamesgrande.com) who has been suffering since 2009 with the symptoms of Lyme and PsA.

    I was on Enbrel in 2009 and got VERY sick – you can read my whole story on google – just search ‘James Grande Lyme’.

    Anyways I was in remission for about 4 years and then 2 years ago my psoriasis came back and effected the joints in my fingers.

    I’ve been unable to perform or practice full time for about 6 months. My LLMD has me on the protocol as seen in the subject line.

    We both believe this disease can be eradicated (again) for me but the Bicillin alone hasn’t made a difference. Once the rifampin was added in to the protocol 30 days ago) my energy levels and fatigue have been getting better, but the finger swelling and pain remains.

    I’m hoping there’s someone here I can talk to about what’s worked for them that have been through something similar? Enbrel ruined my life for years and I was SO sick. I’m petrified to go down that route again – but if these treatments fail or we give up I have no choice but to try methotrexate as I can’t afford to pay out of state anymore.

    Also I’ve started the Pagano diet – about 3 weeks in with a few cheat days (Super Bowl was tough).

    Any help or advice or even a friend would be greatly appreciated.

    I believe in the microbial theory for PsA – and I’m glad I found this place. Only wish I’d found it sooner!!!

    #461482
    Maz
    Keymaster

    Hi GrandeMusic,

    I’m in CT and understand what you’re facing – Lyme got me in 2006 – 2 bulls-eyes but repeatedly negative standard Lyme tests. I dread to think how things would have turned out if I had gone on one of the biologics with Lyme disease and the only remarkable sign that I had Lyme in the early stages was the rashes. Have you had a chance to peruse the Research section yet? An extensive ReA/AS/PsA research section will be next to go live, but in the RA research, under the Lyme section, you’ll find some interesting Finnish research, demonstrating how a TNF-blocker led to reactivation of live borrelial spirochetes after they had been treated with a standard course of antibiotics:

    Anti–Tumor Necrosis Factor–a Treatment Activates Borrelia burgdorferi Spirochetes 4 Weeks after Ceftriaxone Treatment in C3H/He Mice. Journal of Infectious Diseases. 195(10):1489-96 · June 2007.

    In groundbreaking murine research conducted by the Departments of Medical Microbiology and Medicine at the University of Turku, in Finland, to determine if anti-TNF-alpha medications (used in the treatment of rheumatoid arthritis) would be helpful in Lyme disease, mice were infected with two common strains of Lyme disease. After two weeks of infection, the mice were then divided into 5 groups: one group of mice was treated for 5 days with the antibiotic, ceftriaxone, a second group was treated with anti-TNF-alpha only, a third group was treated with both ceftriaxone and anti-TNF-alpha simultaneously, a fourth group was first treated with ceftriaxone and then anti-TNF-alpha was added (4 weeks after ceftriaxone therapy), and the fifth group was just administered a sham saline treatment. Results of this study demonstrated that mice treated, after 2 weeks of infection, with antibiotics only did not test positive by culture or PCR, but in all mice groups treated with anti-TNF medication, live, actively reproducing spirochetes were found in one-third of the mice. This study revealed that after short-term antibiotic therapy that seronegative Lyme can persist in mice and, further, if immune-suppressive therapy is administered, not only can viable spirochetes still be recovered, but that anti-TNF therapy did not afford reduction in joint swelling.

    Further commentary by the Lyme and Tick-borne Research Center at Columbia University Medical Center, NY, can be read here.

    You might also find the first study in this Research section interesting…click here.

    So, these studies may perhaps help validate your poor experience with Enbrel….not that you need validation – you have lived the nightmare!

    I’d be interested to know which LLMD you are seeing, if you wouldn’t mind letting me know via Private Message? I just want to cross-check we have him/her on our list, because the RBF doc lists are only as current as the feedback we receive. Thanks!

    LLMDs can be expensive, for sure! Did your LLMD suspect other additional tick-borne coinfections (e.g., bartonella, hence the rifampin/doxy?). Also, have you considered using minocycline in addition to azithromycin, for example? In the J.D. Carter studies (which were focused on the treatment of chlamydia pneumoniae/trachomatis, either rifampin and azithromycin were used, or doxycycline and rifampin. Minocycline tends to work a bit faster for rheumatics, however some folks do well on doxycycline (both second generation tetracyclines). Here is the J.D. Carter study for you, in case you haven’t come across it – he’s a rheumatologist in Florida:

    Combination antibiotics for the treatment of Chlamydia-induced reactive arthritis: is a cure in sight? Int J Clin Rheumtol. 2011 Jun; 6(3): 333–345.

    If you are finding it impossible to function/work and need to add methotrexate for a while, there is no reason why antibiotic therapy can’t be used at the same time, until it’s possible to revert to the safer medication. Other alternatives are plaquenil and sulphasalazine (has antimicrobial, anti-inflammatory, and immune-suppressive effects). Also, Dr. Brown (if you’ve had a chance to read the book yet?) used to use small doses of prednisone (just physiologic doses of 5-10mg) to help folks through flares and herxing, but just for short periods. Antibiotic Protocols are a long-term therapy, sometimes for life, and these diseases are hard, so whatever works for an individual is a good thing.

    Is your LLMD integrative and helping you with your diet/gut, immune supports, probiotics, detoxing, etc?

    Hope something here helps, GrandeMusic! Glad you found us, too!

    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.

    #461492
    PhilC
    Participant

    Hi James,

    Are those antibiotics the only meds you are taking?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #461494
    Spiffy1
    Moderator

    I read your story, Grandemusic.
    I know you can be of great help and assistance to others. Be thankful you did not carry the psoriatic arthritis gene. Unfortunately, I have the DR4-DQ8 HLA type and I feel like Lyme played a part in developing an RA Factor. Your story is devastating and inspiring all at the same time. Thanks so much for sharing. I wish you well. You deserve it.

    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
    RA Factor 71 in Jan 2015 down to 25 as of September 2017
    DR4/DQ8 HLA...biotoxin illness
    IGG food allergy to wheat, egg, and dairy...probably all grains
    Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
    MTHFR compound heterozygous
    Igenex IGM positive Lyme, minoMWF

    #461562
    GrandeMusic
    Participant

    Hi there-

    Sorry didn’t get any notifications on this! Only taking those 3 yes but feel way worse since starting. Is this normal?

    I’m wondering what to do next. My hands especially finger tips killing me

    #461565
    lynnie_sydney
    Moderator

    Check the box at bottom of this page to be notified of responses

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #461571
    PhilC
    Participant

    Hi James,

    Dr. Brown didn’t use antibiotics alone. He also used NSAIDs to help control inflammation. So consider asking your doctor for a prescription for an NSAID such as celecoxib (Celebrex), meloxicam (Mobic), or nabumetone (Relafen). By the way, celecoxib is a sulfonamide, so people who are allergic to sulfa drugs should probably avoid that one.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #461572
    lynnie_sydney
    Moderator

    Hi James
    You are very probably herxing. See FAQ 20 onwards here. If you continue to feel terrible after adding an NSAID, you might ask your LLMD about adjusting levels of medication. When herxing, it also helps to drink masses of purified water to help flush toxins from the body and to look at some other detox methods. FAQ 21 addresses this subject. Hope you feel better soon!

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
    abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
    Topical bio-identical estradiol + DHEA caps + Progesterone caps

    #461573
    GrandeMusic
    Participant

    I’m currently taking voltaren (dicloflenac) and it definitely helps with the inflammation.

    Some concerns I have:

    On all this medicine I’m finding my fingers, neck, and left achilles heel have been consistently very sore. I’m not sure if I should stop. But in particular my fingers are becoming more painful and more joints are being effected. I have visible red swelling in more of my dystal joints which is concerning as I have an immense fear of permanent damage happening to my joints which will ruin my passion and career. Also my nails are becoming increasingly more effected, especially my two big toe nails.

    Yes I’ve always believed in herxing and then getting over the hump – But I’m feeling like I’ve been herxing for 8-10 months now through different regimens (herbal ABX, bicillin was first 2 months, rifampin added in third month, now going into my fourth doxy).

    At what point do I say to the doc – I don’t think I’m getting better? When I see TINY improvements I get hopeful, but I’m thinking I could be grasping at straws. I’m taking tension headache medicine daily for nearly a month now, as well as tramadol on and off and dicloflenac.

    Once doxy was added 14 days ago my joints are more swollen and kill. When should I see the turning point? 🙁

    #461574
    GrandeMusic
    Participant

    Also I go to a new rheumatologist April 6th where she will presumedly do x rays of my fingers and potentially an MRI of my back or something. What should I plan to discuss with her? I’m pretty sure she will dismiss anything other than methotrexate or a biologic as all four I’ve seen eluded to my LLMD of being a quack and resisted discussing any progressive ideas about Lyme and how I was initially healed of PsA symptoms after treating Lyme

    #461575
    PhilC
    Participant

    Hi James,

    I’m currently taking voltaren (dicloflenac) and it definitely helps with the inflammation.

    Unfortunately, diclofenac is hard on the stomach and liver. If possible, get your doctor to switch you to a safer NSAID.

    On all this medicine I’m finding my fingers, neck, and left achilles heel have been consistently very sore. I’m not sure if I should stop. But in particular my fingers are becoming more painful and more joints are being effected. I have visible red swelling in more of my dystal joints which is concerning as I have an immense fear of permanent damage happening to my joints which will ruin my passion and career. Also my nails are becoming increasingly more effected, especially my two big toe nails.

    Here’s what I suspect: The treatment is working, but a little too well. Your LLMD is treating your Lyme disease very aggressively, which is how they normally seem to do things. Unfortunately, such aggressive treatment can be difficult for some patients to tolerate, especially those who have been sick for a long time. You would probably feel much better on a less aggressive protocol.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #461576
    GrandeMusic
    Participant

    So I had a cancellation call and they got me in to new Rheumatologist today – Do you think there’s a high risk for someone like me to start methotrexate or another medicine she recommends? I’ve been going through this for so long and out of work, I’m not sure I can keep chasing after the Lyme theory because I’m not seeing much relief (just herxing worse and worse). We’ve tried so many treatments (light and aggressive) and nothing seems to really take hold and help me heal

    Hi James,

    I’m currently taking voltaren (dicloflenac) and it definitely helps with the inflammation.

    Unfortunately, diclofenac is hard on the stomach and liver. If possible, get your doctor to switch you to a safer NSAID.

    On all this medicine I’m finding my fingers, neck, and left achilles heel have been consistently very sore. I’m not sure if I should stop. But in particular my fingers are becoming more painful and more joints are being effected. I have visible red swelling in more of my dystal joints which is concerning as I have an immense fear of permanent damage happening to my joints which will ruin my passion and career. Also my nails are becoming increasingly more effected, especially my two big toe nails.

    Here’s what I suspect: The treatment is working, but a little too well. Your LLMD is treating your Lyme disease very aggressively, which is how they normally seem to do things. Unfortunately, such aggressive treatment can be difficult for some patients to tolerate, especially those who have been sick for a long time. You would probably feel much better on a less aggressive protocol.

    Phil

    #461577
    Maz
    Keymaster

    James, what other abx combos have you been on? Did you see my post above on Feb 10th?

    This could be “bacterial hypersensitivity” – rheumatic tissues become allergic/hypersensitive to bacterial toxins – and dosing as per Dr. Brown with minocycline and a macrolide, like azithromycin or clarithromycin might help, after a washout period. When too much die-off occurs, deathbed, dying bugs give off toxins (antigens) that bind to host antibodies that then produce immune complexes. These do nothing but create more trouble. Brown would recommend a washout period to clear these toxins and then reinstate treatment at a lower, pulsed dose. I experienced horrendous hypersensitivity in my first year. It was only in my second year when I switched to low dose intermittent pulsing that I started making big strides.

    Guidelines For Infectious Hypersensitivity Approach To The Treatment Of Rheumatoid Arthritis

    Does your LLMD have you doing anything to prevent fungal overgrowth? Penicillins have a tendency to lead to this, and fungal overgrowth in the gut can produce similar symptoms.

    Have you been tested for coinfections? Bartonella can produce a ton of inflammation and rifampin is a treatment for it. If dealing with both Lyme and bartonella, it can produce nightmarish herxing and bacterial hypersensitivity, hence why LLMDs will sometimes use long pulsing (e.g., 3 weeks on abx and a week off).

    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.

    #461585
    GrandeMusic
    Participant

    I apologize I don’t receive notifications when people reply.

    I’ve been treating Lyme/bartonella on and off for almost a decade now.

    Since last year the treatments have been failing. I’ve tried many different things with little success.

    I’m starting to feel a bit like a guinea pig if that makes sense, grasping at straws hoping to cure my ailments. I haven’t tried what most doctors (3 rheumatologists now and an immunologist) have recommended – methotrexate.

    My fingers (swelling at distal joints) and neck pain has increased while on the ABX listed above, especially once rifampin and doxy were pulsed in.

    I had X Rays done on my entire body per request of rheumatologist and everything looks normal.

    I’m having a difficult time deciding what to do next. The rheumatologist did say that mjnocycline was used years ago but that the treatment is outdated.

    I have been losing income and suffering for a long time so I just feel like trying new things based off what people say in forums has led me down a path lately of prolonged suffering.

    Maybe it’s time to try the methotrexate? I mean after 3 months of treating Lyme and trying all of these things I’ve seen no improvement – in fact more of my
    joints in fingers are effected and now my toenails are effected since starting. I understand getting worse and herxing, but at what point does one turn the corner? I don’t have any more time to waste as my career/social life is being ruined by this illness

    #461588
    PhilC
    Participant

    Hi James,

    My fingers (swelling at distal joints) and neck pain has increased while on the ABX listed above, especially once rifampin and doxy were pulsed in.

    What do you mean by “pulsed in”? Are you not taking those drugs every day?

    The rheumatologist did say that mjnocycline was used years ago but that the treatment is outdated.

    Not really, but rheumatologists have several excuses that they use when they don’t want to prescribe it, and that is one of them. It doesn’t really matter at this point, though, because switching to minocycline right now would likely make you feel worse rather than better.

    Maybe it’s time to try the methotrexate?

    Yes, I think you should consider trying a low dose of methotrexate. But think of it as additional anti-inflammatory support and not as a replacement for antibiotic therapy. Also, ask your rheumatologist if she would consider prescribing meloxicam (Mobic) for you. If you keep taking diclofenac you’ll likely end up with leaky gut syndrome (if you don’t have it already), and some patients have developed liver failure from taking diclofenac. There are much safer NSAIDs.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

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