Home Forums General Discussion How do I know when I need the IVs?

This topic contains 13 replies, has 5 voices, and was last updated by  lynnie_sydney 2 years, 1 month ago.

Viewing 14 posts - 1 through 14 (of 14 total)
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  • #418707
    Airen
    Participant

    I am 3 months in and feel some improvements…I am kind of going at this alone. My primary care dr and my rheumy are not THAT familiar with the protocol…just going along with what I want. How do I know when/if I need the clindamycin IV treatment? Maybe I’m not being patient enough, I am in pain but it could be much worse. I asked my rheumy about it and he has asked me to send him info on the IVs. I sent him the protocol link from this website…I hope he reads the whole thing so we can be on the same page and he is more informed on what I am trying to do here!

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #418729
    Maz
    Keymaster

    I am 3 months in and feel some improvements…I am kind of going at this alone. My primary care dr and my rheumy are not THAT familiar with the protocol…just going along with what I want. How do I know when/if I need the clindamycin IV treatment? Maybe I’m not being patient enough, I am in pain but it could be much worse. I asked my rheumy about it and he has asked me to send him info on the IVs. I sent him the protocol link from this website…I hope he reads the whole thing so we can be on the same page and he is more informed on what I am trying to do here!

    Hi Airen,

    FAQ #s 14 and 16 have a bit of info re: IVs and the rationale for their use.

    Today, IVs are more of an elective decision than in Brown’s day, because he’d initiate treatment with IV clindamycin and, most often, for severe and longstanding cases. We don’t have dear Dr. Brown any more and, unless one’s AP doc offered the IV option, if one is seeing improvements with oral minocycline alone, then folks might either choose not to go to the expense and trouble to do IVs until/if they reach a plateau in improvements…for a jumpstart. The average time for assessing if there is a decent response to oral AP (in labs and/or symptoms) is around the 6-8 month mark.

    At 3 months, it’s still very early days, but some people do want to push the boat out further and try to speed things along. Thing is, herxing can and does occur with IVs, too, so worth being prepared in advance for that potential if choosing this route, because things can feel worse before they improve and response is unique to each person.

    As the saying goes, nothing ventured, nothing gained, so it’s more about personal choice and being aware that IVs may hasten progress or may not, herxing may occur or may not, costs for IVs can be hefty and very important to ramp up care of the gut before, during and after IVs.

    Hope these thoughts might help a bit as you go through your decision-making process about this.

    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.

    #422088
    Jeanies Girl
    Participant

    Thank you Maz for repeating the fact that it generally takes 6-8 months to see a decent improvement. I, too, am in this for about 3 months and have been battling discouragement. There have been improvements. The brain fog is gone. The fatigue is still pretty bad, but it is at a consistent level which is helpful in trying to manage life. In the scheme of things I have trudged along for the last 20 years, I can certainly trudge along a little longer and maybe by Christmas I’ll be a ball of fire.

    DX: Bacterial (mycoplasm) infection
    AP: Began June 2015
    Clindomycin IV 900 mg-every 3 months for 5 days
    Minocycline 100 mg MWF am and pm
    Flagyl 500 mg 2 x day for 3 days in a row every month
    Symptoms: Since approximately 1997-Extreme fatigue, (Intermittent: muscle weakness, stiffness, brain fog, lack of stamina)
    Supplements: Vit. C 3000 mg, Vitamin D 5000 IU every other day and 10,000 on remaining days, Vitamin B complex, Fish Oil 1000 mg 2 x day

    #445339
    Maz
    Keymaster

    Thank you Maz for repeating the fact that it generally takes 6-8 months to see a decent improvement. I, too, am in this for about 3 months and have been battling discouragement. There have been improvements. The brain fog is gone. The fatigue is still pretty bad, but it is at a consistent level which is helpful in trying to manage life. In the scheme of things I have trudged along for the last 20 years, I can certainly trudge along a little longer and maybe by Christmas I’ll be a ball of fire.

    Hi Jeanies Girl,

    Am I reading you right? RA for 20 years and AP for the past 3 months? After 20 years, what caused you to switch to AP?

    I’m wondering whether you had exhausted orthodox solutions for treating RA and what you have been doing to heal your gut. After 20 years, there is likely additional damage and as you are already on a very comprehensive protocol, quite early on, it might behoove you to learn as much as you can about healing leaky gut and also what measures you can employ for detoxing as a lifestyle change…you’ve been dealing with rheumatic disease a long time, so you may already be well versed in all this and so I am just passing this along as a heads up, if not. ?

    Info in FAQs: 37 – 40 might provide some basic pointers to begin your researches:

    http://www.roadback.org/faqs/?faq-category=36

    Just thought to add Adrienne’s AP story link for you, because I had the pleasure of interviewing her for a RBF ebulletion remission corner story in 2009. She was a patient of Dr. Brown’s and, when we talked, was still following his protocols successfully!

    http://www.roadback.org/story/rheumatoid-arthritis-20/

    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.

    #445741
    Jeanies Girl
    Participant

    Maz,
    I have never been told I have RA and my RA factor was okay. The symptoms I’ve been dealing with I’ve had for approximately 20 years. I tested positive for mycoplasm (4.06). The doctor I have been going to initially felt from the symptoms I had that I might have one of the rheumatoid diseases and that is why she tested me for the mycoplasm. Both my husband and I have had similar symptoms, and he has also tested positive for the mycoplasm but not as high. Early on both of us went to a couple of doctors each. Two out of the three doctors I went to said I was depressed. I told them I didn’t think that was my problem. They said you can be depressed without realizing it. They wanted to put me on anti-depressants, but I didn’t feel that that would correct the root problem. My husband went to one doctor who said the same thing and the other doctor said, “He couldn’t do anything for him because there was nothing wrong with him.” (Wish I could figure out how to put one of those growly faces here to express how I feel about that!!!!) Anyway we adjusted our diet to a pretty much whole food diet and that made a world of difference, but I think after so many years with this bacteria running around our bodies we just can’t seem to get to level ground. I’ve wondered would this develop into RA if we didn’t get a handle on this? I don’t have clear answers as to where we really stand.

    Basically both of us have stayed away from doctors because we haven’t had much success with them. In May of this year (2015) I went to the doctor to get some baseline testing done and when the doctor started asking me questions that is when thought she should test for a bacterial infection that might be related to the RA. So I’ve had the symptoms for a long time but wasn’t diagnosed with the bacterial infection until May 2015.

    DX: Bacterial (mycoplasm) infection
    AP: Began June 2015
    Clindomycin IV 900 mg-every 3 months for 5 days
    Minocycline 100 mg MWF am and pm
    Flagyl 500 mg 2 x day for 3 days in a row every month
    Symptoms: Since approximately 1997-Extreme fatigue, (Intermittent: muscle weakness, stiffness, brain fog, lack of stamina)
    Supplements: Vit. C 3000 mg, Vitamin D 5000 IU every other day and 10,000 on remaining days, Vitamin B complex, Fish Oil 1000 mg 2 x day

    #446609
    Maz
    Keymaster

    Hi JG,

    Thanks for clarifying your situation. Needless to say, all the same supportive measures apply for chronic infections as for rheumatic diseases. In addition to mycoplasmas, you ever tested for tick borne infections? Strep? Chlamydias? Viruses? Fungus? Mold?

    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.

    #446718
    Jeanies Girl
    Participant

    Maz,

    Is the mycoplasm the bacteria that causes the rheumatiod diseases?

    I have been tested for lyme, E. chaffeenis, A. phagocytophilum, Q fever, babesia microti, B. henselae which were negative.

    DX: Bacterial (mycoplasm) infection
    AP: Began June 2015
    Clindomycin IV 900 mg-every 3 months for 5 days
    Minocycline 100 mg MWF am and pm
    Flagyl 500 mg 2 x day for 3 days in a row every month
    Symptoms: Since approximately 1997-Extreme fatigue, (Intermittent: muscle weakness, stiffness, brain fog, lack of stamina)
    Supplements: Vit. C 3000 mg, Vitamin D 5000 IU every other day and 10,000 on remaining days, Vitamin B complex, Fish Oil 1000 mg 2 x day

    #452998
    Airen
    Participant

    Maz, what do you suggest for viruses? I know I have them, EBV and CMV. Any thoughts or info on getting these eradicated? I find it frustrating not knowing what to focus on, the mino and RA or the viruses?!

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #453204
    Maz
    Keymaster

    Maz, what do you suggest for viruses? I know I have them, EBV and CMV. Any thoughts or info on getting these eradicated? I find it frustrating not knowing what to focus on, the mino and RA or the viruses?!

    Hi Airen,

    Lyn may have some current insight for you on viral load treatment as she mentioned viruses in a recent post. I’ve been tested for the usual suspects and nothing showed up at that time, but I’ve also been slamming viruses with herbals for a while now. Aside from active viruses that might be treated with the usual pharmaceutical antivirals, some naturopathic methods would be grapefruit seed extract, curcumin, bovine colostrum, Vit C, and boosting glutathione levels with milk thistle, NAC, non-denatured whey protein and glutathione IV pushes. Care needs to be taken with some of these to ensure no contraindications with meds being taken. E.g. Grapefruit seed extract should not be used any meds that work by blocking P450 cytochrome, such as prescribed anti-fungals and macrolides, like Biaxin and Azithromycin (or any med heavy on liver). Suggest researching your viral offenders in relation to effective herbals and then checking interactions with your current and any new meds you begin. Some interactions will, of course, be unknown, if unstudied.

    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.

    #453206
    Maz
    Keymaster

    Maz,

    Is the mycoplasm the bacteria that causes the rheumatiod diseases?

    I have been tested for lyme, E. chaffeenis, A. phagocytophilum, Q fever, babesia microti, B. henselae which were negative.

    Hi JG,

    Many infections, in addition to mycoplasmas, have been studied as triggers for rheumatic diseases. Dr. Brown’s area of interest was specifically mycoplasmas (PPOs pleuro pneumoniae-like organisms), but he also talked about Lyme, strep and brucellosis in the book. Other researchers claim bugs like bartonella, chlamydias, e-coli, oral pathogens, UTIs, like proteus mirabilis, and protozoans, like babesiosis or protomyxzoa rheumatica, are causative or co-causative. So, this is why, when monotherapy alone doesn’t work, others classes of abx are trialed, because it is impractical to test for everything, and a multi-prong approach to treatment (to also help prevent resistance) is employed by some docs. E.g. a tetracycline, a macrolide and sometimes plaquenil. This way there is broad spectrum targeting that can be applied to hit a “multitude of sins,” so to speak.

    Does this 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.

    #453209
    Jeanies Girl
    Participant

    Yes. Little bit by little bit light is being shed on this. I think I was needing a name to put to this problem, so I could then know what I’m up against. It may be that the only name it has is it is a mycoplasm infection. This is a fact and I can keep working on how to best fight this. In the meantime, if I’m not feeling better I need to continue to search out other clues. I feel in my gut, (ha, ha) that I’m also dealing with a leaky gut.

    Thank you for pointing me to the FAQs 37-40. I read them and they were very helpful. I knew magnesium interfered with the AP absorption, but I was unaware of the calcium (which my husband takes), and iron (which I take). We will take those supplements on the days we aren’t on the AP. I’ll also spend some time reading up on the FAQs as a whole to glean more info.

    DX: Bacterial (mycoplasm) infection
    AP: Began June 2015
    Clindomycin IV 900 mg-every 3 months for 5 days
    Minocycline 100 mg MWF am and pm
    Flagyl 500 mg 2 x day for 3 days in a row every month
    Symptoms: Since approximately 1997-Extreme fatigue, (Intermittent: muscle weakness, stiffness, brain fog, lack of stamina)
    Supplements: Vit. C 3000 mg, Vitamin D 5000 IU every other day and 10,000 on remaining days, Vitamin B complex, Fish Oil 1000 mg 2 x day

    #453225
    Spiffy
    Participant

    So I have been trying to make sure I space my Mino awAy from supplements at least 2 hours preferably 4. Is this not enough? Should I take no supplements on Mino days?

    DR4/DQ8 HLA, bio toxin illness
    Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
    Positive RA factor was 71 in January 2015 down to 28 as of September 2016
    IGG food allergies wheat, egg, dairy
    supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
    MTHFR compound heterozygous
    Igenex IGM Lyme positive
    Minocycline 100 BID MWF

    #453233
    Jeanies Girl
    Participant

    For me I have trouble enough remembering to take what pills when (some with food and some without, and not to take Vit D with iron, etc). If I space it on days I’m not taking mino then I can better keep up with it. As for spacing 2 hours, I have read that is enough, but I’ll let the more knowledgeable ones speak on that.

    DX: Bacterial (mycoplasm) infection
    AP: Began June 2015
    Clindomycin IV 900 mg-every 3 months for 5 days
    Minocycline 100 mg MWF am and pm
    Flagyl 500 mg 2 x day for 3 days in a row every month
    Symptoms: Since approximately 1997-Extreme fatigue, (Intermittent: muscle weakness, stiffness, brain fog, lack of stamina)
    Supplements: Vit. C 3000 mg, Vitamin D 5000 IU every other day and 10,000 on remaining days, Vitamin B complex, Fish Oil 1000 mg 2 x day

    #453236
    lynnie_sydney
    Keymaster

    a 2 hour window is fine – that’s the time it takes for food/supps etc to pass through the stomach in the digestive process.

    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

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