Daily dosing or pulsating?

[Bebeo]

Is there current information as to whether the dosage for minocycline is more effective by pulsating (M,W,F) or by taking daily?  I was on a daily dosage for two years but stopped taking it for a couple months when I began having problems.  I have resumed taking it and wondered if I might be more successful with the M,W,F protocol. Thanks for any advice!

[Maz]

[user=2397]Bebeo[/user] wrote:

Is there current information as to whether the dosage for minocycline is more effective by pulsating (M,W,F) or by taking daily?  I was on a daily dosage for two years but stopped taking it for a couple months when I began having problems.  I have resumed taking it and wondered if I might be more successful with the M,W,F protocol. Thanks for any advice!

Hi Bebeo,

Went back to look at your earlier posts as I was unable to remember your diagnosis. Did you manage to get checked for DILE in the end? How's the LDN going?

You mentioned re-commencing on the Harvard Protocol 100mg twice a day every day after having done a washout period. Are you planning on lowering your dose to 100mg BID MWF right away? This is probably not a good idea, if so, as you'll likely experience some rebound flaring.

Daily dosing is thought to be more immune-modulatory with minocycline than with pulsed dosing. The idea of pulsed dosing is to create a scenario of rising and falling serum levels to actually induce controlled herxing (in this context, die-off is good, just not too much). Brown used pulsed dosing, as well, because mycoplasma are very slow growers/reproducers and they don't require daily dosing. For many RAers, daily dosing isn't tolerated well, as too much die-off = hypersensitivity and increased inflam. 

As your SED was in normal ranges in the early summer (what is your CRP reading?), it sounds like you have a fairly mild case of RA? Is that the case? If so, you may not herx much at all with such low levels of inflam by reducing your dose.

Generally speaking, RAers do tend to do much better using a low and slow approach to treatment with minocycline by starting low and increasing the dose gradually to tolerance. Brown describes starting with a dose (doses for mino or doxy are equivalent) as low as 50mg on a Mon and Fri only, then increasing slowly from there to include Wed and moving on up – again slowly – to 100mg once on those days and so on… in some instances to 100mg BID on those days. As you would actually be dialing your dose downwards, you'd probably want to go equally slow, but in reverse.

Normally, a good time to rotate out of mino to use a different tetra (like doxy) is recommended around the 5 year mark. I think you said you'd only been on mino for 2 years, so it would be a bit early to do that kind of rotation unless, of course, you have run labs for DILE and that has become a prob on mino?

The Brown videogives a good explanation for pulsed dosing, as well as the info on the main site under the Historical Protocol. With AP and RA, certainly “less proves to be more” in many cases. Also, if you're finding mino alone isn't doing the trick, many here will pulse in a second antibiotic on their off days (e.g. Tues and Thurs), like azithromycin, which is a nice complementary antibiotic for mino.

Hope something here helps, Bebeo!

Peace, Maz

[Bebeo]

Maz, thanks so much for the information.  I haven't been too clear on what I'm doing and I apologize.   I think part of the problem is that I keep changing direction when things aren't working well.  I was never tested for DILE.  Initially I felt better when I went off the minocycline, but that changed after about six weeks and I started feeling quite bad.  I unsuccessfully tried prescription strength NSAIDs and returned to the minocycline two months ago.  I started slower – 100 mg. on M, W, F.  Having a lot of continuing symptoms, I increased it last week to 200 mg. M, W, F, but began wondering if I shouldn't just return to the daily dosing.  Maybe I should continue on the 200mg MWF for a few weeks before increasing to daily dosing.

As far as the LDN, the intial 4.5 was too intense…I had increased symptoms and I couldn't sleep (at all!).  I am now on 1.5 mg and hope to increase by .5 every couple weeks.  I think the LDN has helped with my hands as they are not so swollen and stiff in the mornings.  However, I'm still having a lot of problems with my shoulders and arms.  Correct, my RA is not a severe case.  My rheumatologists refers to it as RA, but I don't actually have the RH factor, so it's more of an autoimmune inflammatory arthritis condition. From what I can tell on the lab reports, my CRP is in normal range. 

[Bebeo]

I don't think the pulsating dosing is working for me.  I originally thought I might be herxing from the LDN, but now think I had a bad flare up due to not enough minocycline in my system.   It was severe enough to resume predisone to try to get things calmed down.   I have now been began taking 100 mg twice a day  and 5 mg. prednisone for nearly two weeks 5 mg. and I'm feeling a little improved. I hope to bring the prednisone down to 2.5 mg for a few days before totally going off with hopes that the the increased minocycline will be effective.  I also ordered brand Minocin from Canada to see if that works better. 

[sierrra]

I went to pulsed dosing for 6 months after a few years on 200 mg/day. It gave me a chance to address yeast issues, but the pain came back near the end of that six month period, so I went back to 200 mg/day and do feel better.

Sierra

[Bebeo]

Hi Maz,

I'm still trying to figure out what is going on and symptoms are worsening. I posted a new post asking for info about to determine if if you have candida and recommendations for getting rid of it.  Thought I'd schedule an appointment with my rheumy and discuss, but would love to tap into your wealth of information if you're available and I haven't been too frustrating to you.  Many thanks, bebe

[Maz]

[user=2397]Bebeo[/user] wrote:

I'm still trying to figure out what is going on and symptoms are worsening. I posted a new post asking for info about to determine if if you have candida and recommendations for getting rid of it.  Thought I'd schedule an appointment with my rheumy and discuss, but would love to tap into your wealth of information if you're available and I haven't been too frustrating to you.  Many thanks, bebe

 

Hi Bebe,

Well, can only really give a fellow-patient's insights here, but going back through your posts, you've made quite a few changes in the last month or two and any one of these things could have precipitated worsening….coming off the mino for 6 weeks, re-starting at a lower dose and then suddenly increasing to a higher pulsed dose, starting on the highest dose of LDN, then backing down…while also decreasing the pred quite quickly. This is a lot of protocol changing and my guess is that it's really stirred things up.

What symptoms have made you think candida? If candida is an issue, then increasing your mino dose at this point might only worsen the situation (as Sierra described above). Rather, adding a pulsed systemic to your protocol, like diflucan, would be a better option while keeping steady on the low pulsed dose for the time being until the candida is controlled. Not forgetting doing what you can to eat a diet free of candida-feeding foods and healing your gut.

The thing about seronegative RA is…is it really seronegative RA or something else, like reactive arthritis? If so, minocycline alone might not be the answer and adding to your abx protocol might be.

And, back to DILE, I would definitely get tested for it just as a precautionary measure, because the reason for feeling the need to stop the mino initially was the increasingly worsening symptoms. Stopping the mino for 6 weeks and seeing resolution of symptoms is pretty typical of DILE. However, the return of arthritic symptoms during the washout is probably just a return of the initial arthritic problem.

Also, were you aware that Lyme disease can present with a very peculiar lack of inflammation? It can also present with a good deal of inflammation, but certainly the opposite is true, too. I would also get tested through IGeneX for Lyme to cover this corner. A result pointing to Lyme would very definitely change the whole schematic for treatment.

I think these are the steps I'd personally take, Bebe…but please only take what resonates with you. 😉

Peace, Maz

 

[Bebeo]

Maz, thank you so much for taking the time to share your insights and knowledge!   I had put the thought of DILE aside, but after you laid out the course  that it takes, I definitely want to be tested for it.   Maybe that is what is going on… the pieces of the puzzle are certainly there.   I'm planning to call my rheumatologist tomorrow for an appointment.

Inronically, the minocin from Canada arrived yesterday.  I guess I'll switch to it until or if I get a positive DILE diagnosis.    I'm still taking prednisone and wonder it could mask a positive DILE blood test?  Clearly, I have no knowledge medical background or knowledge. 

I was purely guessing about the candida, as I don't seem to have the symptoms associated with it, but just trying to eliminate all possibilities.  If the DILE isn't the problem, I'll check out Lyme testing.  You mention testing by IGeneX….can it not determined through a blood test?

Many, many thanks.

bebe

[Maz]

[user=2397]Bebeo[/user] wrote:

I had put the thought of DILE aside, but after you laid out the course  that it takes, I definitely want to be tested for it.   Maybe that is what is going on… the pieces of the puzzle are certainly there.   I'm planning to call my rheumatologist tomorrow for an appointment.

Inronically, the minocin from Canada arrived yesterday.  I guess I'll switch to it until or if I get a positive DILE diagnosis.    I'm still taking prednisone and wonder it could mask a positive DILE blood test?  Clearly, I have no knowledge medical background or knowledge. 

I was purely guessing about the candida, as I don't seem to have the symptoms associated with it, but just trying to eliminate all possibilities.  If the DILE isn't the problem, I'll check out Lyme testing.  You mention testing by IGeneX….can it not determined through a blood test?

Hi Bebe,

In all honesty, I don't know if DILE is an issue for you, but it would just be a wise next step to check into it so you know whether or not you're dealing with it or not and can remain on mino.  The lab tests are common and easy to run, so it's not a bad idea to just check and see. 😉 Thing is, not to worry about this, because there are alternative abx that can be used if it is a problem and the condition itself resolves very quickly once the offending drug is stopped.

You may find, ultimately, that it was just the generic you were using, as this can be an issue, too. Brand name Minocin could induce a bit of a herx for you when you get going on it…so just a heads up about that. Generics are permitted by the FDA to vary from the original formulation by about 20% either way and some generics contain dyes and fillers that some folk are sensitive to.

Some AP docs do pulse in diflucan as a part of their patient's protocol, just to avert possible candidoisis, say, once a week. So, if candida is a worry and your doc is open, he could prescribe you this to support your protocol.

Yes, the usual Lyme tests are blood tests. The standard form of testing is called, “Two-tiered” testing, which includes an ELISA test as a first step and then, if positive, a Western Blot test is run to confirm the ELISA, which is believed to be more sensitive. Both standard tests are horrible, though, and miss about 50% of cases, but are covered by most carriers. You could ask for these two tests to be run together to save time and see what turns up, as they would be covered at no cost to you. However, if negative, would still suggest running IGeneX labs, as their western blot includes antibody bands that were removed from standard tests when they were creating the LymeRix vaccine that were never returned! Most docs don't know this vital piece of information…but suffice to say that IGeneX tests are thought to be more sensitive and provide better accuracy. Lyme is pretty immune-suppressive, so it will always need to be a clinical diagnosis, but most people like to have some sign that Lyme may be implicated, even if only one or two significant antibody bands, before heading off to a Lyme doc. To order the IGeneX labs, you'd need to call them and ask them to mail you a testing kit, then get a doctor to sign off the order on their western blot before getting the blood drawn to send back to the lab in their return mailer. If it gets to this point in the process, we can help you will details on how to go about all this, Bebe.

http://www.IGeneX.com

Hopes something above helps?

Peace, Maz

[Bebeo]

Update:  Saw my rheumatologist today and he did not agree to lab testing for DILE as he doesn't feel that I am exhibiting the symptoms.  He does not think it's a candida issue either.    He thinks my condition has intensified and that antibiotics are no longer a solution for me.  I had other lab work done, but do not have the results yet.  His recommendation is methotraxate (sp?).  I told him that I wanted to at least give the the brand minocin a fair chance before changing.  He said that was reasonable and we agreed to give it another month and that I would use prednisone along with the minocin to bring the inflammation down.  In the spirit of being forthright, my next step, befotr getting on methotraxate (which I do not want to do), is to have have my saline breast implants removed (a whole different forum), which replaced ruptured silicone ones two years ago.  

Maz, thank you again for the assistance, guidance and support.   

bebe

[Bebeo]

I am cautiously excited…felt so bad the last couple days, as was the case when I saw my rheumatologist, but awoke up this morning feeling considerably better.  Maybe I've been herxing, as you said could happen.  I've been on brand minocin for 5 days now…I guess the next few days will tell for sure! 

[Bebeo]

Feeling quite bad; pain in shoulder joints is severe..,how does one know if it's a genuine flare-up or herxing?  I'm trying to eliminate all possibilities of why minocycline doesn't seem to be working for me when it worked so beautifully for a while.  I ordered a Lyme test and am on a herbal candida cleanse (rheumy wouldn't prescribe diflucan or do a dile blood test).  :X

[Trudi]

[user=2397]Bebeo[/user] wrote:

am on a herbal candida cleanse (rheumy wouldn't prescribe diflucan or do a dile blood test).  :X

I have read that candida die-off can cause quite a bad herx.  How long have you been on the candida cleanse?

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[PhilC]

I have a feeling that you are going to be looking for a new doctor. Your rheumatologist seems just a little too willing to abandon the AP. You would probably get more cooperation from a general practitioner.

You mentioned that you are trying to get off of prednisone. How much prednisone are you currently taking?

Phil

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

[Bebeo]

I am on only on 5mg of prednisone, but hate taking any of it.  I'm also on 1.5mg of LDN and hope to increase it with a reduction in prednisone.  Just started the candida cleanse, so don't think that's causing any problems.  Really can't figure out why the minocycline seems to have lost its effect when it worked so well for a while, but am trying to explore all possibilities. 

[Author]

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