Home Forums General Discussion confused about protocols

This topic contains 5 replies, has 3 voices, and was last updated by  Maz 3 years, 10 months ago.

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  • #308487
    ellie6
    Participant

    I am seeing my doctor today but confused about the different protocols and what to ask for. I have read about Brown’s but now confused about CPN. How do I kow which to do? Historically I was treated fr lyme disease in 2012 with various antibiotics including doxy’,mino,zithromax,amoxicillin,bactrim,mepron,rifampin and bicillin. I initially improved but then worsened and stalled.

    I have been off antibiotics since 2013 and was diagnosed with several autoimmune conditions including psoriasis, psoriatic arthrits/ankylosing spondylitis and hashimotos. I suffer from IBS issues as well. My lingering issue is chronic SI joint pain and inflammation.

    Testing showed positive to RMSF, mycoplasma, EBV and HHV6. Not necessarily current infections but exposure.

    I feel I should give the antibiotic protocol a try but not sure what would be best to start with. Yrs ago when I was first put on doxy all my pain vanished wthin 24 hrs of starting it. Of course 72 hrs later I was incapacitated by the pain increase. Does this give a clue as what would be best to pursue?

    To complicate things I recently tested positive for SIBO. My doc was going to prescribe flagyl. Do I try this alone first??? Thanks!

    #373407
    m.
    Participant

    Hi ellie6,

    Yes, comparing protocols and being unsure & confused about what course of action to take is common. It can provoke a lot of anxiety & fear, which on top of not feeling well, simply adds to our difficulties.

    No matter what your doctor recommends today, if you are comfortable with the recommendation & proceed, you can always request follow up testing so you both know whether what you’re doing is working.

    If you treat the SIBO, then follow up to make sure the protocol did indeed clear the infection. If you are testing positive for other infections, or anemia, or inflammation….all of these should begin to move in the direction of improvement/in range/negative if your protocol is working.

    Sometimes symptoms improve before labs and sometimes visa versa. (Dr. Brown observed this).

    Since there is no one-size-fits-all protocol, it might be good to let go of the idea of landing on the “right” or “perfect” course of action, and just begin to take some reasonable steps.

    I don’t fully understand the connection, but I’ve read quite a lot about a link between gluten intolerance & Hashimoto disease. If you are not gluten free already, that is one area to investigate.

    With SIBO, and being on antibiotics, perhaps look into a more robust probiotic protocol with retesting to make sure it’s working.

    Some people travel to seek the care of an experienced AP practitioner, or request their local MD contact a more experienced AP doctor for a consultation.

    Good luck!

    #373408
    m.
    Participant

    ellie6,

    You might look into VLS#3 for IBS & SIBO problems. The DS, double strength, is available by prescription only, and I’ve read of various success getting coverage. Might be worth a try.

    #373409
    Maz
    Keymaster

    @ellie6 wrote:

    Testing showed positive to RMSF, mycoplasma, EBV and HHV6. Not necessarily current infections but exposure.

    I feel I should give the antibiotic protocol a try but not sure what would be best to start with. Yrs ago when I was first put on doxy all my pain vanished wthin 24 hrs of starting it. Of course 72 hrs later I was incapacitated by the pain increase. Does this give a clue as what would be best to pursue?

    To complicate things I recently tested positive for SIBO. My doc was going to prescribe flagyl. Do I try this alone first??? Thanks!

    Hi Ellie6,

    In addition to m.’s insightful responses above, I’d fathom a fellow-patient guess to say that doxycycline and flagyl, taken together would be a reasonable course to take, if your doc is on board with this. They are complimentary in actions and can be used together. You were on a load of abx in the year you treated your Lyme and I’d fathom another guess to say that you probably wound up in a pretty hypersensitive state from all the die-off (see Henry Scammell book for how rheumatic tissues become hypersensitive to too much die-off).

    http://roadback.org/index.cfm/fuseaction/education.display/display_id/105.html

    The interesting thing about the CPn protocol (did you also test positive for CPn?) is that the protocols used are very similar to ones used by Lyme Literate MDs…e.g. a tetra, a macrolide and a nitroimidazole …given in combination to hit all the pleomorphic forms of the Lyme bug. It’s also a really comprehensive protocol that will hit a number of other infectious potentials. The difference between the CPn protocols (Wheldon and Stratton Protocols) and Lyme protocols is in the dosing and pulsing. That said, however, as you may be so hypersensitive and having trouble detoxing (especially dealing with SIBO), then a CPn-type protocol, using doxy (or mino) in combo with Flagyl (or Tinidazole) might be a really helpful approach in the sort of scenario you’re describing.

    Thing is…these protocols are not an overnight fix and, although some folks are fortunate to get their rheumatic disease under control within a year, Brown often talked about remission taking 2 to 5 years. The goal is to get the dosing to a tolerable level for the individual and to “kill the bugs, not the patient” in the process and to slowly re-train the immune system to behave less reactively to the bacterial endotoxins. Additionally, it sounds like you’d need to think about ways to help your body to detox (e.g. antioxidative strategies), so that you can avert the effects of the die-off.

    Bottom line – a significant worsening within 3 days of doxy is pretty typical for Lyme. Really, any worsening within the first two weeks is pretty classic for Lyme and a good indication that it’s an antimicrobial that is working. Getting it dosed in a tolerable way is the main thing, as we’re all looking at long-term therapy (sometimes for life) and worth noting that minocycline is also an approved ACR DMARD for RA. In the case of Flagyl (or Tinidazole), it’s important to be aware not to drink any alcohol, at all, as a severe disulfiram-like reaction (nausea, vomiting, skin flushing, tachycardia, and shortness of breath) can occur. In fact, even mouthwash with alcohol in it can cause this reaction and I’d probably stay well away from any wine sauces with alcohol and even alcohol wipes.

    Ellie, it’s been a while since we last chatted and there is a recent listing for a new LLMD in Northampton, MA, who accepts insurance, if you’d like this info and you are looking for a doc who might be able to help?

    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.

    #373410
    ellie6
    Participant

    Thanks for the responses. I met with my doc yesterday and she came up with a plan. The first thing she wants to go after is the candida as my numbers continue to be elevated via bloodwork. I have had trouble tolerating nystatin so we are going to start with low dose fluconazole and increase as tolerated. She wants to treat the SIBO with rifaximin once my insurance approves it. Rifaximin is not a systemic drug and remains in the intestines. The concern is if I take a systemic antibiotic right now without candida under control I could end up worse.

    After these treatments if I am still no better she would be open to low dose antibiotics. She said she would have to do some careful reseach but was very familiar with this site. No, I have never tested positive for Cpn. Historically I have had an awful time handling most antibiotics except zithromax.

    At this point it appears I have an over active immune system based on my numbers and my autoimmune conditions. Trying to get it to calm down is the problem. I radically changed my diet a yr ago cutting out all gluten, soy, starch, grains and dairy. She feels more allergy testing is necessary to both fod and environmental stuff as my IgE is extremely high.

    #373411
    Maz
    Keymaster

    @ellie6 wrote:

    I met with my doc yesterday and she came up with a plan. The first thing she wants to go after is the candida as my numbers continue to be elevated via bloodwork. I have had trouble tolerating nystatin so we are going to start with low dose fluconazole and increase as tolerated. She wants to treat the SIBO with rifaximin once my insurance approves it. Rifaximin is not a systemic drug and remains in the intestines. The concern is if I take a systemic antibiotic right now without candida under control I could end up worse.

    This sounds like a sensible plan in light of your candida results. If flagyl is taken when candida levels are high, the candida can spiral out of control. This is because flagyl might be doing biofilm-busting in the gut and any candida holed up in these biofilms would be released to wreak havoc. Quite a number of folks here, in the past, have shared how candida has erupted after starting flagyl. Both flagyl and diflucan can be hard on the liver (whereas Nystatin is more of a wash-thru), so it’s not wise to do these together anyway.

    After these treatments if I am still no better she would be open to low dose antibiotics. She said she would have to do some careful reseach but was very familiar with this site. No, I have never tested positive for Cpn. Historically I have had an awful time handling most antibiotics except zithromax.

    On the other hand, minocycline taken with diflucan has shown enhanced anti-candida props due to their synergistic effects….just passing this along, because it doesn’t have to be an either/or in this sort of scenario:

    http://www.ncbi.nlm.nih.gov/pubmed/20707818

    “The mechanism of action was suggested to be the enhancement of minocycline on fluconazole penetrating biofilm, and inducing the intracellular calcium release, instead of impacting on the uptake and efflux of fluconazole. Our results suggest that the combination of fluconazole and minocycline can reduce the fluconazole resistance of C. albicans in vitro.”

    At this point it appears I have an over active immune system based on my numbers and my autoimmune conditions.

    Yes, there are many here that can probably equate.

    Trying to get it to calm down is the problem. I radically changed my diet a yr ago cutting out all gluten, soy, starch, grains and dairy. She feels more allergy testing is necessary to both fod and environmental stuff as my IgE is extremely high.

    Has your doc tested you for mold exposure or other environmental insults (e.g heavy metals)? These can also cause extreme reactions and hypersensitivity, as I’ve personally experienced. It seems that a good number of Lymie-rheumatics become environmentally sensitive and it sure can be a task weeding through all the potentials, so I wish you well in your searches for your answers, Ellie6. 🙂

    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.

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