AP changed to 200mg 3 X a week after a year of 200mg daily

[Ronsword]

Yes, I am familiar with this doc. I've e-mailed him, though not too crazy about the idea of chelation being the main theme. I know of a patient tentatively scheduled to see Dr. A so will let you know her feedback.

I will pass along the rooting memo:)

best

 

[Ronsword]

sorry- I forgot about not mentioning names.

RF

[Ronsword]

hi,

Anne's been well tolerating the mino schedule now, going on 3 weeks but is starting to notice some pretty bad flares in her feet and ankles. More curiously, she is having more menstrual bleeding than usual. Any ideas?

tnx

 

[Maz]

[user=2264]Ronsword[/user] wrote:

Anne's been well tolerating the mino schedule now, going on 3 weeks but is starting to notice some pretty bad flares in her feet and ankles. More curiously, she is having more menstrual bleeding than usual. Any ideas?

Hi Ron,

Sorry to hear Ann is having some bad flares….if this is any comfort, this fits the timing of herxing and may go on for some time until this time has passed. Women also seem particularly prone to worsening during dips in hormones (like mid-cycle and right before and during a period). This is likely due to the loss of the protective effect of hormones which are steroidal in nature.

Doing what she can to detox during this early herxing period should go a long way to helping relieve the symptoms….like drinking plenty of fresh, pure water, resting when needed, infrared sauna (if she has access to one), lemon/olive oil detox drink, epsoms/peroxide baths, eating as fresh and clean a diet as poss, keeping bowel movements regular, etc.

If the herxing begins to get intolerable for Anne, backing down from the dose may be preferable to increasing pain meds or steroids. Hypersensitivity (or delayed sensitivity) can build when the dose is too high and may appear as fluid retention and swelling in the lower legs, ankles and feet…this is from too much die-off, which the body can't dispose of fast enough. When this happens, Brown would do a washout week and re-start the abx on the same pulsed or a lower dose to give the sensitized tissues a chance to recoup.

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

Here is some info that was taken from a lecture given by Brown on the Hypersensitivity state:

http://roadback.org/index.cfm/fuseaction/education.display/display_id/122.html

As for increased menstrual flow, hormones can really be knocked out of whack with rheumatic diseases. Is Anne getting close to peri-menopause when cycles can become erratic? This is only surmise on my part, but if she's had a lot of inflammation, there may be water-retention that is being released. Has she had thyroid function checked lately? Overlaps in AI diseases are common and thyroid is one of those bug-bears that often goes with RA that would affect cycles, but can creep up.

Hope something here may help, Ron, and hope others will chime in for Anne with their suggestions, too. Herxing is par for the course, unfortunately, but once over this challenging early period, the improvements should start to come in a 3 step fwd, 2 step back dance all the way with brief windows of light, but gradually increasing as time goes on. It's a very slow therapy, so it's the longterm trend to keep your eyes on, and flaring will continue to occur, unfortunately, but flares should begin to diminish in frequency, duration and intensity with time.

Peace, Maz

[Ronsword]

tnx Maz. I will copy and print out the suggestions. She is perimenopausal (age 48), has tried some of the natural hormonal creams (Yam derived I believe), but seems to feel this month's bleeding is the longest she's noticed. 

Yea, I've been preparing her for the herx and am actually welcoming it if you know what I mean; after all, it is the hallmark of inflammatory therapy right? I will look at the Brown links. I do know from reading thru his protocols that he did prescribe low does pred but as you say, it can be a real devil and I don't think Anne wants to even go there. Though we wouldn't rule out Alleve, aspirin, etc. just to minimize the heat and let the abx do their work more effectively.

take care

ps- did you see my article yet?

 

 

[Maz]

[user=2264]Ronsword[/user] wrote:

tnx Maz. I will copy and print out the suggestions. She is perimenopausal (age 48), has tried some of the natural hormonal creams (Yam derived I believe), but seems to feel this month's bleeding is the longest she's noticed. 

Yea, I've been preparing her for the herx and am actually welcoming it if you know what I mean; after all, it is the hallmark of inflammatory therapy right? I will look at the Brown links. I do know from reading thru his protocols that he did prescribe low does pred but as you say, it can be a real devil and I don't think Anne wants to even go there. Though we wouldn't rule out Alleve, aspirin, etc. just to minimize the heat and let the abx do their work more effectively.

 

Hi Ron,

What article? 😯 Did I miss something? So sorry, if so…have had my head down and distracted in all kinds of ways of late, so I wouldn't be surprised if something went right over my head. It's also been Prom and graduation season for my youngest.

Yes, age 48 is pretty typical for when peri-meno kicks in. I'm going through the same now (50) and from what I understand it can go on for years!!! :angry: Cycles get shorter, longer, heavier, lighter…all over the place. Sometimes they'll come every few weeks, sometimes every 2 months and be short or long. I've had them as short as a day or two or as long as two weeks. My gyne told me the only time to be concerned is if you get two consecutive periods coming closer than at two-week intervals, as it could be related to some other problem. Although I don't know if this is the case for your wife, it may be perfectly normal and just that time of life for her…but if she hasn't had a gyne check lately, wouldn't hurt to stop in and get checked out. Not a bad idea to also get thyroid panels run while there, too, if they haven't been done recently, including thyroid auto-antibodies.

Yup, herxing is the hallmark of the therapy (actually a good thing, though it feels rotten) and shows its hitting the target. See how she goes…if she can manage it with OTC anti-inflams (kept to minimum), then all well and good. If the herxing gets too much, then Brown's usual practice of a washout week and re-commencing on a lower, pulsed dose should resolve the issue….even if she gradually increases over time back to where she started, if that is her preference.  

So nice of you to check in and do hope Anne gets through this swiftly, Ron. It went on several months for me, but I was pretty severe and never think I'm the best person to compare notes with, except for maybe worst case scenarios. :roll-laugh:

Peace, Maz

PS I've definitely decided to come back as a man next time!
 

[Ronsword]

being a man aint all its cracked up to be either. One third of us have prostate cancer by age 70 and don't know it:(. Plus, the ladies outlive us as a general rule LOL

The reason I bring up the perimeno issue is that it seems to have coincided with the start of taking minocycline. Maybe just a coincidence, but seems like a weird coincidence.

Her herxing is not intolerable at this point so we will wait and see. If really bad, OTC plus the washout looks like the trick.

(I've resent the New Dawn article to your inbox).

take care,

Ron

 

 

 

[Ronsword]

Just noting that Anne increased her mino by one daily dose to every other day. She has experience some dizziness prior to increase but I think that's a common side effect. Otherwise, proceeding along according to schedule:)

Ron

 

[Maz]

[user=2264]Ronsword[/user] wrote:

Just noting that Anne increased her mino by one daily dose to every other day. She has experience some dizziness prior to increase but I think that's a common side effect. Otherwise, proceeding along according to schedule:)

 

Ron, how is Anne managing with the increase so far? Maybe too early to tell? The dizziness was something I experienced in the beginning, too, for several months, but it passed in time.

Peace, maz

[Ronsword]

Tnx for asking. Dizziness has passed for now, tolerating mino okay. Doc ordered liver/kidney this week just to be sure. I think we'll start the milk thistle and lower dose C as well.

I think the trick is to not get too ambitious and start ramping things up to prematurely!

we'll be in touch,

Ron

 

[Ronsword]

It is ironic how things work Maz. No sooner than I posted my last message, that Anne was 'burning up'—she describes it as feeling like on fire. I have a few questions when you get a chance.

She's not ready to say it is herxing yet but if so, the problem of using anti-inflamms is this: she also has (I suspect) IBS; has for several years but hasn't gotten it checked yet. Very senstive GI tract. The issue is, drugs like Advil, Alleve give her some pretty bad tummy aches. On the other hand, if the herxing should progress, I know that Brown was very big on reducing symptoms to allow better perfusion of mino. So it's kind of like a Catch-22.

I  know you are very fond of pred (only kidding:-), though Brown did suggest it in very small doses and only very temporarily. Anne is of course, reluctant, but I'm only looking at the problem medically.

A final option which was mentioned by the Marshall people (who, incidentally, won't let me post messages about Anne on their board because she is following the Road Back protocols – now that's open mindedness!!) is the possible use of guafenison. Ever hear of this?? They say it can really help moderate inflammatory response but I'm only repeating what they say; I don't know myself yet.

Anyway, any thoughts or comments are appreciated.

 

[Maz]

[user=2264]Ronsword[/user] wrote:

She's not ready to say it is herxing yet but if so, the problem of using anti-inflamms is this: she also has (I suspect) IBS; has for several years but hasn't gotten it checked yet. Very senstive GI tract. The issue is, drugs like Advil, Alleve give her some pretty bad tummy aches. On the other hand, if the herxing should progress, I know that Brown was very big on reducing symptoms to allow better perfusion of mino. So it's kind of like a Catch-22.

Hi Ron,

I haven't heard of anyone using guafenison here, but have heard of bendryl having similar effects to help reduce histamine (bacterial allergy) reaction that occurs during herxing and some here will use it to help modulate effects of herxing. I think guafenison has some interesting properties, thinning mucous, but also for treatment of gout (increases excretion of uric acid) and as a skeletal muscle relaxant.

My guess is that with the increased dose, Anne is now in the throws of herxing with the febrile-like symptoms. I understand her reticience to call it “herxing,” as I could never tell either, except in retrospect. Herxing and flaring are pretty similar in appearance, but herxing tends to be shorter-lived with improvements following, whereas flaring heralds worsening. It's only when the worst has passed it was possible for me to look back and say, “Ahhh…that was a herx.” It's a good sign the mino is reaching its target, but miserable when going on and needs to be kept tolerable, if at all possible, to keep inflam to a minimum in order to prevent hypersensitivity building. The best way to control big herxing is to lower the dose for a while and stay at the low, pulsed dose or, when stabilized, to attempt to gradually build up again. The goal with AP is to kill bugs, but not the patient, so to speak.

Ron, LDN (low dose naltrexone) is worth researching for folk with gut issues. Some interesting studies are proving its beneficial effects with the gut and its action is particularly interesting, helping to modulate immune function. It's a very nice companion to minocycline, too. Of course, being an off-patent drug, like cheap antibiotics, few want to invest in studying it for off-label purposes….t'was ever thus, eh?

 http://www.lowdosenaltrexone.org/

Pred for temporary relief of herxing was used by Brown and I'm not totally against it…I think it has it's place for very short term use and can be life-saving in some instances, but have seen too many folk here have such difficulty with this drug, weaning off. It really is a catch-22, because for temporary, miraculous relief, it has horrendous longterm side-effects. :crying: I know you've done your research, so no need to elaborate, but everyone needs to make their own risk/benefit assessment with pred and, for folk who need to make a living, raise young ones, look after elderly ones, etc…functionality may come into the equation.

There are other ways to lower inflam, if Anne is open to more naturopathic means? Would be happy to share what I've done, if this helps, and sure others would chime in, too. If you start a new topic thread, others are likely to see it and respond.

Peace, Maz

[Ronsword]

thanks Maz. So far, so good. She had that really bad flare the other night and is okay at the moment. Any naturopathic methods you've used are always welcome, but no rush. Right now, I might suggest some Aleve on a full stomach if Anne is up for it next time a bad one emerges. Or perhaps benadryl at night. Meanwhile, I'm keeping notes!

ps- have you done any more writing? Been mainly working with editors to clarify “Virginia Livingston” and “cancer bacteria” on Wikipedia but I think we've got it straightened out now.

take care,

Ron

[Ronsword]

hi all – any help would be appreciated.

Do side-effects from minocycline  involve colon issues, stomach ache, irregularity, etc? Anne's been complaining of some real GI issues that are worse than her normal IBS symptoms. She's seeing a regular doc this week, but wondering if anyone had any suggestions or experiences in this department with minocycline?

I'm worried that the conventional doc is going to question her use of minocycline! So we'll see how that goes.

Anyway, any help and/or remedies would be very welcome.

Ron:(

 

 

 

 

 

[lynnie_sydney]

[user=2264]Ronsword[/user] wrote:

hi all – any help would be appreciated.

Do side-effects from minocycline  involve colon issues, stomach ache, irregularity, etc? Anne's been complaining of some real GI issues that are worse than her normal IBS symptoms. She's seeing a regular doc this week, but wondering if anyone had any suggestions or experiences in this department with minocycline?

I'm worried that the conventional doc is going to question her use of minocycline! So we'll see how that goes.

Anyway, any help and/or remedies would be very welcome.

Ron:( 

 

Ron – gastro-intestinal upset is listed as one of the side effects of mino. http://en.wikipedia.org/wiki/Minocycline

I personally never suffered from stomach issues and was on mino for 5 years although I had a little nausea for the first 2 weeks. However, I pulse dosed it on MWF and that may have prevented this. 

What came up for me is your statement that your wife has 'normal IBS' – which suggests that her GI issues are ongoing. IBS tends to be a catch-all term rather than a specific diagnosis. There is alot of opinion in holistic/AP/Lyme circles that people with chronic illness have GI issues that are a result of multiple food sensitivities (whether caused by the illness, or part of it etc is still a matter of debate). Perhaps the key is simply that our immune system is based in the gut so it makes sense that the gut is involved. You may want to get your wife tested for food sensitivities. Gluten and dairy are the usual prime culprits. There is also the possibility that she may be experiencing increasing problems from NSAID use. Salicylate drugs are the most common culprits for GI problems (including stomach ulcers) – but long term use of ibuprofen can also be implicated. 

Other than this, a really good probiotic is essential when taking daily abx to prevent imbalance of gut flora. Is she on one? A good prebiotic powder may also be worth considering. I used one over the last several months to help with GI issues that flowed on from a liver crisis last year. I have also heard from a Sydney naturopath that I consult that aloe vera juice is very protective of the gut lining. He recommended this one to me for a friend going through chemo. This product is a New Zealand one – I'm sure there will be a good one available in the U.S. http://www.lifestream.co.nz/Products/Lifestream-Biogenic-Aloe-Vera/default.aspx

Hope some of this helps Ron. I'm sure others will chime in with their thoughts. Lynnie

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)

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