Home Forums General Discussion Inflammation is coming back

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  • #306336
    bonnielou
    Keymaster

    Hi all. Well, I have had 4 wonderful years where my symptoms were pretty much under complete control. I have lived life like a completely normal person, other than still being slightly more fatigued than pre-RA. And then at my last rheumy appointment in November, I observed a joint on my right hand that was swollen, and some discomfort. Now, when I was teaching a yoga class on Wednesday night, I felt sharp pain in my right foot. I made it through class, and then investigated and observed swollen joints on my toes. It all manageable right now, but it’s a sign I am losing the wonderful ‘remission’ I was enjoying.

    So — one obvious choice is to get a prescription for doxy, and try that for awhile instead of the mino. I can also increase the plaquenil, which I had cut down to once/week — maybe go back to 4 X/week, on the non-mino/doxy days.

    My chiroprator gave me a strong curcumin supplement today (Curcumax Pro – which includes turmeric and boswellia). Is it time to actually find an AP doctor? At this point s/he might laugh at me, as my level of health is still pretty enviable. Any other thoughts?

    It’s a beautiful snowy day here in Chicago, and I am grateful I can still get out there and shovel with the best of them. (After work of course). Thanks.

    Bonnie

    Bonnie Lou
    RA 02/07,AP 10/07
    Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
    Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

    #361215
    Maz
    Keymaster

    @bonnielou wrote:

    So — one obvious choice is to get a prescription for doxy, and try that for awhile instead of the mino. I can also increase the plaquenil, which I had cut down to once/week — maybe go back to 4 X/week, on the non-mino/doxy days.

    My chiroprator gave me a strong curcumin supplement today (Curcumax Pro – which includes turmeric and boswellia). Is it time to actually find an AP doctor? At this point s/he might laugh at me, as my level of health is still pretty enviable. Any other thoughts?

    Bonnie, very sorry to hear you’re experiencing some return of symptoms. All your thoughts are good ones, but if you don’t have Dr. S’s contact info, I can also send you that so you can email him and ask for his thoughts. My guess is that he would encourage you to go for a round of IV clindy and to possibly add an oral macrolide in, like azithromycin. You’re not far off the 5 year mark, which kind of equates to the old “marital 7-year itch” adage, where a rotation to a different tetra for a temporary period may help, but if doxy doesn’t work as well, then usually folk will add the second abx.

    You’re doing so much to remain healthy with diet and exercise. What have you managed in the way of detoxification? Just wondering if boosting glutathione might be of some help as you do exercise frequently. Undenatured whey protein is one way to boost glutathione and also oral liposomal glutathione gel caps. Jill just posted a great radio show on the benefits of Vit C (which provides extra-cellular detox), while glutathione provides intracellular detox. Detoxing is so important to help the body lower oxidative stress which is what causes damage, not only as we age, but more so in the chronically ill. There are lots of other methods to detox, like FIR saunas (the cardiologist in the radio show referred to the skin as the body’s third kidney) and all of these will help to reduce inflam and, thus oxidative damage. Going ‘low and slow’ initially with detoxing is quite important, as if one has never done detoxing before, symptoms of toxin release can be quite dramatic.

    If you’d like Dr. S’s contact info, I’d be very happy to send it to you. He’s so very kind to freely answer patient queries by email.

    #361216
    PhilC
    Participant

    Hi Bonnie,

    Have you made any changes recently? Did you start eating something new recently, or change brands for something you eat regularly? That includes supplements in addition to food.

    As for switching to a different antibiotic, that would probably be a wise thing to do. I don’t think a switch to doxycycline (by itself) would be the best option, though. A switch to a different antibiotic class makes more sense.

    Besides doxycycline, some of the other antibiotics typically used are azithromycin and clarithromycin. However, more and more it is becoming apparent that using a single antibiotic is not the best approach, since what often happens is that the bacteria are suppressed but never completely eliminated. Because of that, some doctors treat patients with more than one antibiotic.

    Here are some links to information on some of the combination antibiotic protocols (CAPs):
    The Sriram, Stratton, and Wheldon treatment protocols
    Stratton Combination Antibiotic Protocol Update: February 2006
    Emerging Stratton Protocol 4/2008: a new approach to an old set of problems

    The second link above leads to a page with a fairly detailed description of how to apply the Stratton protocol. Although it was designed to treat Cpn, it is reasonable to assume that the Stratton protocol would be an effective treatment for many other chronic bacterial infections. The third link above leads to a page with information about updates to the protocol, the main one of interest being a switch to a preference for starting with clarithromycin instead of azithromycin.

    Anyway, I just thought I’d pass this info along for you to think about and consider discussing with your doctor. Good luck!

    Phil

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

    #361217
    kali
    Participant

    Phil,
    This is great information. What are your thoughts about adding NAC as well as pyruvate to the RA protocol. Would the same theory apply here as with CPN?
    Also, maybe you can explain to me what Dr. Stratton was saying about the flu-like die off versus the HSP60. I was not familiar with some of the abbreviations LPS..? (liposomal)?
    I think I understand the HSP60 as the bug surviving in a stressed form that is releasing lots of inflammatory toxins – but still surviving and still doing damage.
    When we feel the flu-like effects – bugs are actually dying. Is this accurate? Do you know if this only applies to cpn?

    Thanks for your help,
    Kali

    #361218
    PhilC
    Participant

    Hi Kali,
    @kali wrote:

    What are your thoughts about adding NAC as well as pyruvate to the RA protocol. Would the same theory apply here as with CPN?

    Adding NAC is a good idea because it’s an antioxidant and helps to protect the liver. Also, you may be infected with Cpn and not know it.

    I am not sure about pyruvate. It seems kind of experimental to me. Also, they are saying to take it an hour before the antibiotics which seems like a bad idea since they are using calcium pyruvate. I might consider taking pyruvate at some point, but I would not take it within two hours of any tetracycline-type antibiotic.

    @kali wrote:

    Also, maybe you can explain to me what Dr. Stratton was saying about the flu-like die off versus the HSP60. I was not familiar with some of the abbreviations LPS..? (liposomal)?

    I’m not sure. Can you point me to the exact quote? LPS = lipopolysaccharide.

    @kali wrote:

    When we feel the flu-like effects – bugs are actually dying. Is this accurate? Do you know if this only applies to cpn?

    I’m not sure, but I suspect there probably isn’t a single answer. In the case of the “NAC flu,” it’s because the NAC is killing the EB (elementary body) form of Cpn.

    Phil

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

    #361219
    lynnie_sydney
    Participant

    I have found N-AC (n-acetyl cysteine) a great adjunct treatment. My energy levels were noticeably increased after adding 2 x 650mg tabs per day (1 am 1 pm). I have chronic CPn showing up in my pathogen load and also an SMA (Smooth Muscle Antibody) test showed that I have low level “autoimmune” issues in my liver, which ius why I added it. Something else that I also found on the cpnhelp site is the stripping of B12 at the cellular level. I added sub-lingual B12 to my regime also and, again, noticed a big difference to my energy levels (take a good B-Complex as a base).

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #361220
    kali
    Participant

    I’m not sure. Can you point me to the exact quote?

    Phil,
    Just to clarify – here is the bit I was asking about. It is from the last article. Thanks for the other information. 🙂

    But emerging research has been suggesting that Cryptic Cpn is not benign even if it is not replicating. Cryptic Cpn is essentially a stressed form of Cpn, and stress causes it to generate of Heat Shock Protein (HSP60). HSP60 is many times more inflammatory than LPS endotoxin. LPS endotoxin is the one that causes the fever and chills and is released mostly when RB’s are killed and lyse, or when EB’s are killed. The inflammation of plaques in cardiovascular disease has been associated specifically with Cpn HSP60 and with the persistent (cryptic) form of Cpn. Inflammationi by HSP60 when forcing Cpn into cryptic form may in fact, in Dr. Stratton’s current view, be the major cause of so-called die-off reactions. “So-called” because HSP60 is induced not by the bacteria dying off, as the release of LPS is, but rather by the Cpn surviving in a stressed, cryptic form.

    Lynnie,
    Thanks for the information on NAC. It sounds like a good supplement to add to protect the liver. My doctor has mentioned it as well.

    Kali

    #361221
    PhilC
    Participant

    Hi Kali,

    Unfortunately, I don’t think I can explain the situation any better than the way it was written.

    Phil

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

    #361222
    PhilC
    Participant

    Hi Bonnie,

    Some additional thoughts… Have you been paying close attention to type of minocycline you have been taking? Some people, after experiencing worsening symptoms, realize that the pharmacy had recently begun filling their prescriptions with a different generic. It may even have happened to me, though in my case it was of my own doing– I had the pharmacy switch my doxycycline prescription from Watson capsules to Watson tablets.

    Since you are taking 100 mg of minocycline MWF, it seems to me that a logical next step is to try taking 100 mg every day. That’s what I would try first if I were in your situation.

    Phil

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

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