Forum Replies Created
January 14, 2023 at 12:48 pm #467191
Glad you’re feeling a bit better! First few months can be a bit up and down – longer for some, and many don’t expect notable improvements for a year or so. Labs sometimes improve before symptoms and sometimes vice-versa.
Check out FAQ #7 for info on the early nausea some folks experience and how you might counter it:
Hopefully it will resolve with those insights and over time. Dizziness occurs for some, too, but I found it was transitory.
All the best!January 13, 2023 at 1:53 pm #467188
If you type in “Botox” in the search box at the top of the General Discussion, there are a number of past discussions on the topic. Seems that it is used therapeutically for folks who suffer from Raynaud’s. Maybe someone with RA here who has tried it before can chime in. When you run the search on this forum, you’ll find one past poster who describes experiencing RA flaring after having Botox.January 3, 2023 at 1:58 pm #467162
Lynne is right that you might find more specialized insight with regard to autoantibody presentations at the link she provided. However, if you’re interested in pursuing treatment with AP, you have found the right place.
Just my two cents, for what it’s worth, folk arrive here with a multitude of overlapping antibody presentations and these can change and morph over time. Just as a point of possible interest, I was watching Stanford’s Grand Rounds after the pandemic started, and they were reporting all kinds of autoantibody aberrations as a result of Covid, a number of whom developed positive scleroderma autoantibodies. At that early stage, however, they weren’t able to provide insight as to whether these signaled new-onset scleroderma, or if the autoantibodies were just transient bystander artifacts of the infection and would normalize during the recovery phase.
This is the video, if you have an interest – both autoantibodies are mentioned in this talk:
Autoantibodies and Covid-19: Stanford Dept of Med Grand Rounds 3/31/21
In any case, people have reported here that autoantibodies recede in time once starting the therapy. For others, they may wax and wane or never go away.
Hope you find your answers and will share them here when you find out.January 3, 2023 at 1:40 pm #467161
Sorry for the delayed response – busy holiday weekend! First, though, should let you know that this is a patient discussion forum, so no experts here, and we can only relate our personal experiences of the therapy with one another.
Sounds like you’re a go-getter type of person and have done magnificently to get your ducks in a row to give yourself the best possible chance for treatment to help. I’m guessing your NP will have recommended a good quality probiotic, too?
The way your RA started sounds very similar to how it began for me and my past infection panel is similar to yours, except that it was an acute case of Lyme disease that got the ball rolling, swift-onset fashion. It was a confusing time as I had two bulls-eye rashes but the initial Lyme test (ELISA) kept returning equivocal and so my PCP was reticent to prescribe treatment. Knowing what I know now, that was a huge life-altering error in judgment as a bulls-eye rash is definitive, regardless of testing.
Do you think your NP might consult with an experienced AP doc on the IV clindamycin? It might save you travel costs and stress. There is an APRN in Iowa who took over from an experienced AP doc who retired a few years ago who might be able to consult in this way. Or, perhaps Dr. N might consult with your NP?
Also, were you given the option to take Minocycline? You may do perfectly well on doxy but Minocycline seems to work faster for many RAers due to its lipid solubility and ability to cross cell walls. This can be very helpful with intracellular infections.
Not everyone has access to IVs and, although others have shared it provided a bit of a jumpstart, it wasn’t necessary for everyone. Many only ever use oral AP and may later add oral clindy if progress is slow.
Hopefully, now the holidays are passed, others with RA can chime in for you.
One last thought, with a history of chlamydia, have you considered the CPn combined antibiotic protocols CAP)?December 27, 2022 at 4:16 pm #467150
It’s not imperative to get infection testing prior to starting the therapy. Minocycline is an approved disease-modifying anti-rheumatic drug (DMARD) and is listed on the American College of Rheumatology site, as follows:
American College of Rheumatology
Minocycline Fact Sheet
The tetracycline class of antibiotics have numerous properties in addition to their anti-microbial ones, as follows:
Tetracyclines: Nonantibiotic properties and their clinical implications. J Am Acad Dermatol, 2006 Feb;54(2):258-65.
Tetracycline Antibiotics for Treating Rheumatoid Arthritis: A Systematic Review and Meta-Analysis [abstract]. The 2009 ACR/ARHP Annual Scientific Meeting Philadelphia October 16-21, 2009; Adwan, M. H. Q., Arthritis Rheum 2009;60 Suppl 10 :406 DOI: 10.1002/art.25489.
Although the above abstract is no longer available online, the following is quoted information that was contained in the original abstract describing the many properties of tetracycline antibiotics:
Tetracycline antibiotics have been used in Rheumatoid arthritis (RA) since the late 1940s. Animal and in vitro studies have shown them to modify the inflammatory process in various ways unrelated to their antimicrobial activities. These include effects on matrix metalloproteinases, Nitric oxide, phospholipase A2, inflammatory cytokines, immunomodulatory Uand anti-oxidant effect as well as effects on angiogenesis, apoptosis, MAP kinases, TGF beta and poly (ADP-ribose) polymerase-1.
In the case of SD, the standard approach is generally to withhold immune-suppressive treatment until there is confirmation of diagnosis and/or symptoms arise, and degree of progression can be assessed. Some people manage to go for years without any treatment as progress is slow. In other cases, progression can be swift and debilitating and treatment is lifelong. When you get a chance to read the Scammell books, you’ll read that Dr. Brown’s philosophy was to ideally start AP ASAP before tissue damage occurs.
You’ll find lots more supportive info on the website in the Resources and FAQ sections. If you can, try to read the Physician packets that are also loaded in the Resources section. Most folks diagnosed with SD prefer to follow the Daily Protocol in order to achieve maximum benefit from the disease modifying properties of Minocycline but that’s to be decided between patient and AP practitioner based on an individual health assessment. Those with measurable inflammation (elevated SED and/or CRP) may need to start low and slow to prevent too much microbial die-off, which can result in excessive herxheimer flaring and tissue hypersensitivity (described in the books). Also, as you’ll read in the books, Dr. Brown would often start treatment with a round of IV clindamycin (bearing in mind that many rheumatics found him after years of illness), and the purpose for using this broad spectrum medication was to clear out any microbes that might impede progress on oral Minocycline. Microbe testing is used by experienced AP providers (may help in getting costs covered with documented infection) but also to serve as a pathogen load baseline for retesting as time passes to follow progress.
Hope the above is helpful and glad you found the doc info you wanted. Let us know how you get on – rooting for you and a happy, healthy 2023 and beyond to you and yours!December 23, 2022 at 8:53 pm #467147
Very nice to meet you, but very sorry you had the need to seek us out due to your health concerns. If I can offer a wee bit of Christmas cheer, you have several very positive things that, in general, bode well for recovery when folks start of AP. First, you are young and male. Second, if you find you have an autoimmune disease of some sort, starting the protocol before too much damage sets in (that can be trickier to navigate and take longer to reverse) and, while still mild, is a very good head start. Third, scleroderma tends to be one of the rheumatic diseases that can have excellent responses to the treatment.
Also, you’re in luck – there is an experienced APRN in your state (his wife has RA) who may be a good option and offers telemed once seen in person (to become an established patient, he requires an initial in-person workup). Would you like his contact info, as well as Dr. F. In AZ?
Highly recommend reading the two Henry Scammell books as they will provide you with more info and confidence in the rationale for the protocol. I think they are also available as audio books.
Completely get how you’re feeling in every respect, and am sure we all do here. You’re in good company and please feel welcome to ask questions and post for peer support whenever you want.
Most importantly, breathe and enjoy your Christmas!December 13, 2022 at 2:23 pm #467122
Nice to see you again! Unfortunately, as Vincenzo mentioned, it’s a journey finding any doc who accepts insurance to help with the therapy. There are newly emerging integrative rheumatologists, who seem to be meeting increasing demand for a more holistic approach rather than only offering symptomatic relief with immune suppression. Much of the time, although their consulting fees may not be covered and they are out-of-network, labs and meds are covered (I think Vincenzo mentioned this above). So keep the faith that you will find a doc to help.
The Minocycline in Early Diffuse Scerloderma trial (as outlined in SD research section on site here), used 100mg Minocycline once a day for the first month and then an additional 100mg was added to the treatment group thereafter and for the year-long duration of the study. It was a small trial but resulted in remarkable results. Of course, in all studies, to reduce variables, the treatment groups are treated the same and individualization of the study treatment is not used.
As far as I know, as just a fellow patient, doxycycline doses are more or less equivalent to Minocycline. The reasons why people are prescribed doxy instead of Minocycline is multi fold: they need to switch due to side-effects, like hyperpigmentation, medication reactions, unavailability in some countries, higher doses needed for some bugs and where equivalent doses of mino may not be tolerated, etc. Minocycline was unavailable in Dr. Brown’s formative years of helping rheumatic patients, but seemed to be preferred when it came into the market in the early 1970s. However, Minocycline is generally preferred by AP docs and patients today as it has superior lipid solubility, crossing cell walls more effectively. Minocycline, notably, also has excellent neuro-protective effects and has been studied in early MS, for example, and post-stroke. This is not to say low, pulsed doxy won’t be effective, but reversing SD symptoms takes a lot of patience and time and most folks want to see results as soon as possible.
Knowing which infection one is treating can be especially helpful in choosing which protocol (daily or pulsed and which antibiotic) to follow and Dr. Brown did this routinely with all his rheumatic patients. Some bugs, like mycoplasmas, are cell-wall-deficient and slow-growers, and don’t necessarily require daily dosing. Other bugs, like common tick-bourne ones, may require daily dosing in order to prevent resistance issues. Treating without first testing for infections may, in some instances, abrogate test results, making it harder to later identify chronic infections that go into protective mode and hole up in biofilm colonies.
All this said, some people here have just dived in and are successful. Others may find they later need to tweak their protocols. Generally speaking, it’s those with measurable inflammation who suffer most with Herxing and where “less is more” resulting in a need to start low and slow. This isn’t usually the case for those with normal SED Rates and CRP, as noted in the Pulsed Protocol Doctor package on the site, and who are able to tolerate the daily protocol. Tetracyclines have numerous immune-modulating properties and so these can also help speed up progress.
Personally, I prefer to err on the side of caution and would not self-treat. So can only speak generally as to what others have shared in the past. RBF only advocates AP therapy for rheumatic diseases, providing resources to share with doctors, so doesn’t offer medical advice, per se, as there are no medical professionals here.
I hope others will chime in with their personal experiences for you!November 29, 2022 at 2:57 pm #467112
Hi Webby and welcome,
You’ll find the original Pulsed and Daily Doctor packets in printable format from PDFs here – these describe both some of the rationale and how to prescribe mino for various rheumatics diseases:
Minocycline is an American College of Rheumatology DMARD and is described as such in their site for RA:
Some doctors may be unaware of all the immune-modulating effects of tetracyclines in addition to their anti-microbial bacteriostatic properties:
“Tetracycline Antibiotics for Treating Rheumatoid Arthritis: A Systematic Review and Meta-Analysis [abstract]. The 2009 ACR/ARHP Annual Scientific Meeting Philadelphia October 16-21, 2009; Adwan, M. H. Q., Arthritis Rheum 2009;60 Suppl 10 :406 DOI: 10.1002/art.25489.”
Tetracycline antibiotics have been used in Rheumatoid arthritis (RA) since the late 1940s. Animal and in vitro studies have shown them to modify the inflammatory process in various ways unrelated to their antimicrobial activities. These include effects on matrix metalloproteinases, Nitric oxide, phospholipase A2, inflammatory cytokines, immunomodulatory and anti-oxidant effect as well as effects on angiogenesis, apoptosis, MAP kinases, TGF beta and poly (ADP-ribose) polymerase-1.
You’ll find other interesting articles you may like to print for your doc, here:
And media articles to browse through to decide what you’d like to print:
And Scleroderma Research, in particular the “Harvard Protocol” (aka the daily dose protocol) Minocycline in Early Diffuse Scleroderma trial:
There are also numerous Patient Stories where you might find ones with which you identify.
Hope that helps to start, Webby!November 23, 2022 at 2:32 pm #467109
Great to hear your update and that you’re still on a positive trend! Youth and being male can help!
If you need an AP doc in Ireland, there’s one in Carrigaline and would be happy to send you deets in a PM.
Also, in case this helps when you see your rheumy, if you follow this link to the website Journal articles section, you can print out the American College of rheumatology page Which outlines the use of Minocycline for RA as a DMARD (disease-modifying anti-rheumatic drug.
Some rheumies are open to prescribing and others may be reluctant, so perhaps this blog article will help?
All the best for your doc appt.November 9, 2022 at 1:49 pm #467094
The CPn site info really was to show how macrolides can be pulsed for autoimmunity caused by chlamydia pneumoniae, so wondered if that might help to share with your doc?
People who use azithtomycin on this forum are prescribed a broad spectrum of doses, either daily or pulsed, and it really depends on a doc’s approach and the patient’s pathogen load – it’s more tricky when going blind to root causes. E.g., azithromycin 250mg twice daily for 5 days a week, or 250mg once or twice a day on Mon, Wed, and Fri. Lyme docs might dose 250mg twice daily every day for 2 weeks on and two off.
If you have a copy of The New Arthritis Breakthrough, there is a chapter on titration of the dose to patient tolerance. So, as Dr. Brown would have done it, it’s a process where the doc might prefer to start “low and slow” and gradually titrate the dose higher to see how that is tolerated. Some docs want to see a good herx, because it’s an indication that the therapy is hitting the target, but then dial it back to patient tolerance.
In the Pulsed Protocol Physician packet, you’ll find the rationale Dr. Brown ascribed to for his patients and how oral clindamycin, for example, might be pulsed once a week when patients were unable to get IVs. You might like to print off the PDF version for your doctor to read?
Dosing has a lot to do with patient tolerance, which is an unknown until one starts the therapy, but I certainly discovered from hard-won experience that it’s far easier to titrate up from a low dose than to have to dial it back in the midst of a big herx and resulting hypersensitivity.
Some people do very well on antibiotics other than tetras, though sometimes it takes a bit of trial and error and what doctors refer to as “therapeutic probing.” E.g., Rheumatologists will do this all the time, regularly switching medications, as it’s not a given that every patient will respond well to a particular rheumatic DMARD or biologic medication.
I understand this is vague, SusanMary. It’s very tough for folks who aren’t working with an experienced AP doc and have to try to navigate things. What might help in your decision made with your doc is to take into account that azithromycin has quite a long half life in the body, so when treating chronic mycoplasma infection, for example, low, pulsed dosing is sufficient and a common approach to AP to start.November 8, 2022 at 2:16 pm #467091
Hi lov4life – have just sent you a PM on the system with info you requested. You should get a PM email notification to follow to your PM inbox.
PS I’ll edit your email address above in order to protect your privacy.November 7, 2022 at 2:18 pm #467087
Are you working with a doctor in regards to your RA treatments? Are you considering trying AP?
In terms of the difference between a herxheimer flare and a disease flare, you might find FAQs #20-25 helpful and I’ve added the direct link below to #23 on the main site:
I don’t have any personal experience of wormwood tincture, but I have avoided anything alcoholic since I got an RA diagnosis. This is for various reasons; I can’t tolerate it, I want to protect vital organs, and many forms of drinking alcohol contain sugars and grains. RA can make one feel foggy-brained as is, so I just prefer not to exacerbate that. I have been prescribed Liposomal artemisinin, however, and still take it at intervals in a pulsed fashion. I never experienced anything remarkable in the way of herxing but I’d been on AP a long time by then. I mainly found it helpful for its researched immune-modulating effects for RA and it’s other studied, remarkable effects.
Hope you feel better soon!November 4, 2022 at 10:05 am #467082
Yes, I have personal experience of these meds. Sounds like you’ve got yourself a very holistic doc there who is helping you with more than just AP! I currently see an integrative rheumy and have always preferred this multi-pronged approach.
I am just a fellow RAer, although from personal experience I can share that I started out on a 750mg twice daily tetra dose (for Lyme which was very hard going). Some AP docs use this method to clear out any acute infections and then dial the dose back if/when herxing arises. It’s why IV clindamycin is sometimes employed when someone is starting out as well (or for flares and at varying individualized intervals). Was any infection testing run for you?
Are you still on Orencia? If so, this might explain your doc’s decision as immune-suppression can block herxing effects. If so, it’s not necessarily a bad thing as Dr. Trentham (Boston rheumatologist that ran MIRA trials) says in his article:
Article by David E. Trentham, M.D., “Antibiotic Therapy for Rheumatic Disease. You know where we have been; so where are we now?”
Clearly minocycline can provide adjunctive therapy for RA. In other words, minocycline can be combined with any other available agent. There are no exceptions! Examples include Plaquenil, methotrexate, Arava, anti-TNF compounds like Enbrel & Humira and the new intravenous drug, abetacept (Orencia). Decreased doses of one or both agents may help to avoid gastrointestinal side effects. This regimen usually reflects a desire to obtain additional improvement or to gradually convert to the safer drug, minocycline. Examples include 1. Not having to increase the dose of methotrexate and 2. By increasing the dose of minocycline additional improvement and /or stability may be gained. Perhaps use of two oral drugs might preclude the necessity for an injectable and more expensive drug. Obviously judging the net effect of either drug is difficult or impossible. The same impasse may arise if a clinical or laboratory side effect occurs.
Titration of the AP dose to individual patient tolerance can be a bit of a winding road of trial and error. If your doc’s approach is concerning you, though, perhaps you can send her an email to ask questions?
Getting thyroid levels in shape can make a huge difference to RA pain levels, because both a hypo or hyper state can bring different types of pain that can be confused with RA pain. Again, this can be very individual, depending on all kinds of variables like inflammation levels that influence how well storage (T4) the hormone converts to active free thyroid hormone (T3), and how well thyroid meds are absorbed and various vitamin and mineral levels.
Regarding the potential for mino-induced hyperpigmentation, not everyone gets it. From studies I’ve read it seems to be related to iron metabolism and ascorbic acid (vitamin C) can help avert it. Many RAers (and with hypothyroidism) have low iron and, on low pulsed AP doses, doesn’t seem to be a big issue. I take various antioxidants to help prevent hyperpigmentation and yet found I got brown patches from sun exposure on my forearms with tetra but not the blue patches or spots with low pulsed doses of mino. Sunscreen helps.
Have you had a moment to browse the LDN website? The doses used for autoimmunity are very small.
I have found plaquenil to be a fantastic adjunct with some nice anti-inflammatory properties. I take it with food to avoid any GI effects. It’s one of the rheumatic meds with a pretty good safety profile, though it might interact with other meds that use a particular detox pathway in the liver (P450 cytochrome). I’ve always taken supps to support liver function, like milk thistle and NAC (n-acetylcysteine). I’d always run any supps by my doc though. Just as a precaution, I get an ophthalmic eye check annually. I gather that the original doses that were used were very high and caused eye issues but since lower dosing has been used, this is a pretty rare occurrence these days.
Hope something above might help?November 3, 2022 at 9:49 pm #467078
The lovely Rheumy says ‘Oh yes it would have been because of their anti inflamatory etc effects – not that we would use them these days ” If you didn’t laugh you would cry – BUT she is an extremely hard working sweetie so I just let it go -you have to pick .
do you pulse your doses MWF????? – it was such a great way – till it wasn’t. Its the different dosage amts MINO and Doxy were 50mg twice a day MWF
Regarding lupus and staph, I just read and saved this brand new research finding today! How’s that for synchronicity?
Yes, some folks here have pulsed zith as you say. This is because zith has a pretty long half life and takes a while to break down. This is why just a few day course is used for strep throat in a Z-pack. You’ll find this sort of protocol outlined on the CPN Help website so hope that helps in terms of printing something out for your doc.November 3, 2022 at 10:23 am #467075
Could you Please send me the NP contact information from Iowa? I dont live far away from that place. Also, The doctor on my state list is retired now. I would appreciate If you could share AP providers around Twin city MN area. I can drive out of state for 3-4 hrs to seek the treatment. I am particularly looking for someone who can provide me IV clindamycin treatment.
Thank you for all your support and help.
Hi there – have just sent you a PM on the system with info you requested. You should get a PM email notification to follow to your PM inbox.