Extreme herxing on only 25 mg minocycline

[threefays3]

I’ve only started AP for RA first of December and immediately dropped from 100 mg to 25 mg after extreme herx. I discontinued the mino for a week after the first dose and have been on 25 mg once a week for the last three weeks. I drink lots of lemon water and take other supplements to help detox, yet herx is still so severe I’m bedridden 5 to 6 days/week. Just to get to the bathroom is excrutiatingly painful.

My doctor is inexperienced with AP, so I’m pretty much doing this on my own. I understand that 25 mg is about the lowest of dosages. Should I drop the dosage lower than 25 mg, only take it every other week, or continue in hopes of the herx easing soon?

Have others had such herxing on only 25 mg?

Any feedback is greatly appreciated!

Leslie

[laurawm]

Hi Leslie – welcome to the forum. I have found everyone here to be very helpful and friendly – I hope we can extend this kind of welcome to you. It would be helpful if you told us a little more about your RA history such as when diagnosed, what – if any – treatments you may have tried, and other sicknesses/chronic health issues in your past.

I take 50mg capsules of minocycline and the herxing can be very extreme but I am getting slowly better over time and multiple means of detox do help (I take sea mineral and epsom salt baths every night and this helps me a great deal). If you obtain Henry Scammell’s book “The New Arthritis Breakthrough” he talks of some patients starting very low and slow as you describe in order to be able to tolerate a higher eventual dosage. Anti-inflammatory medications as well as other detox means can be helpful which everyone will be happy to add comments to throughout a discussion. If you don’t have a list of ABX doctors in your area, you can also request it here and a moderator will send you a list.

Sorry you are in pain,
Laura

[Maz]

Leslie, just wanted to add a second welcome to Laura’s very warm one. So sorry to hear you’re in such pain (I understand, as I was in similar shape at the outset), but as Laura mentioned, it can really help to get some background on what has been going on for you…e.g. duration of disease, previously-used and current drug and supps, if any, if these were stopped suddenly, infection history (teeth, UTIs, gut, tickborne, etc), if known, etc.

There have been a couple of instances, to my knowledge, of folks who have had extreme hypersensitivity as a result of herxing. In both cases, it was ultimately discovered that Lyme disease and other tickborne coinfections were the culprits. This is not to say that this is what is going on with you, just that these two stand out in my memory recall.

There is a very experienced AP (antibiotic protocols as per Dr. Brown) physician who is very kind to freely answer patient questions by email and phone, if this might be of some initial help. In the meantime, if you can supply us with a bit more background info, those of us reading this info from you may be able to come up with some fellow-patient ideas to pursue. Would also be happy to send you an AP provider list for your state (bearing in mind that some states are better off than others and sometimes this requires a bit of travel), if this would help. Sometimes seeing an experienced AP Physician right out of the gate can provide just the hope and insight needed to begin this treatment path, which is a slow one, with more confidence.

[PhilC]

Hi Leslie,

Consider switching to doxycycline and starting out with that instead. It doesn’t penetrate into the joints quite as well as minocycline, so the “herxing” is likely to be a little more tolerable. My own experience has been consistent with that; hopefully your experience will mirror mine.

Phil

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

[Valsmum]

HI there,
I was one of those that had herxing with just 25 mgs of Minocycline. It did not like me. I don’t have much advice, others here would be better with that regarding abx. I just wanted to tell you so you didn’t think you were the only one. Some of us are more sensitive than others.

I don’t know if you are having a flare but what helps me is to eat just raw fruits and vegetables, but no nightshades or corn. My joint swelling calms down. Hope you feel better. I just watched a youtube video and the woman with RA had it for 15 years, then she started eating fruit and veggies/juicing too and after taking 95,000 pills she finally got off her meds. Type in “Pat Blair RA RAw Food diet” and it should come up when you are at the youtube site. Its only a couple of minutes and se is not selling anything.
I hope you improve, take care.

[threefays3]

Many thanks for your kind responses. I’m 54 and was diagnosed w/RA in 2004. Tested negative for Lyme at that time, but will ask to be retested. Within a few months of first symptoms, I was unable to work and had to go on disability. I was healthy prior to this with no prior illnesses or hospitalizations. Curiously, I had a root canal a few weeks before first symptoms and have often wondered if it could be the cause.

I

[laurawm]

Hi again Leslie,

It sounds like finding effective detox is going to help you so much to move forward – we all have our favorite methods here – some are simple and relatively easy to apply such as epsom salt and dead sea salt baths, detox teas (right now I’m drinking Traditional Medicinals EveryDay Detox), tri-salt supplements (magnesium, calcium, potassium – needed by the body to decrease acidity and thereby detox), enzymes taken between meals, fermented foods, exercise (yeah right – but any movement does help) to the more involved – coffee enemas, meyer’s cocktail IVs, juicing, and infrared blankets and saunas. Herxing in and of itself is your body trying to detox, it’s just our livers and guts can only process out but so many toxins at one time so we do what we can to try to either help flush out the liver and gut, or provide a different means of toxin removal (through the skin with baths, or the infrared sauna and excercise with sweating, also sunlight provides infrared rays so getting out in the sun for limited periods can be helpful).

I will say that my experience with detox has been extreme – even what is eventually helpful starts out hard – I have extreme diarrhea and herx reactions to most effective means of detox – once I adjust to a new means or dosage and the diarrhea dries up and my swelling and pain goes down, when I up my ABX and detox yet again, I go through the same reactions – over and over – do not let me discourage you – but I want to be realistic. For me, I find comfort knowing that my body is getting rid of toxins and though I still have a lot of bad mornings and nights – I am making steady improvements. I will be in remission eventually – it’s just a slow process.

As Maz mentioned, you could ask her for Dr. S’s e-mail and get his advice. It has helped me greatly to find a doctor who understands, promotes, and prescribes this treatment.

If you get another Lyme test, testing through Igenex Labs is often more accurate than standard tests. It sounds very plausible that your root canal could have triggered your RA, though – many conventional studies have explored oral bacterias and root canals as trigger links to RA, but do not conclude that there is ongoing infection. 🙄 This is just incorrect. Here is a link (though you’ve likely read such before) talking about the numerous systemic bacterial infections associated with root canals:
http://tuberose.com/Root_Canals.html

Best to you and let us know how we can help you further, even if it’s just needing encouragement on hard days,
Laura

P.S. Do you have a copy of Scammell’s book, “The New Arthritis Breakthrough”? This is so very helpful.

[PhilC]

Hi Leslie,
@threefays3 wrote:

Since the beginning of December, I have been on minocycline, LDN and Celebrex.

LDN makes some people worse. Consider the possibility that your severe reaction to minocycline may be due (at least partially) to the effect that LDN is having on your immune system. You may need to drop the LDN and try it again at a later date (unless you are 100% certain that it is helping).

@threefays3 wrote:

Thank you for the tip of changing to doxy. I plan to do exactly that and will let you know how I fare. I only wonder if I

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

[Krys]

Leslie,
I hope LDN IS working for you as a great adjunct.
But Phil’s remark is very valid. I’m one of the unlucky ones as far as LDN goes. I only took it for over a week and it’s been 4 months and I still have not recovered the ground lost. I believe that my body shut down the production of endorphins as all kinds of symptoms started: loss of joy, depression, severe exhaustion, severe bone and organ pain, especially kidney pain, slight outer tremors and quite severe inner tremors, muscle spasms.

I hope you are not reacting to it negatively, but as you started all at the same time and LDN is an adjunct, not the main treatment, it seems really worthwhile to stop taking it and retry later.
Usually it is advisable to start LDN when already on AP for a few months, though there is one member who first started on LDN, had great results and then introduced AP. Unfortunately nobody knows what their reaction will be and how strong, positively or negatively, it will impact them.

Fingers crossed that adjustments, if any, will resolve all present problems, Krys

[Maz]

Leslie, thanks for sharing more about your backstory – this can really help to generate responses when folks know more and, if you want to add a signature line, this can help in that you won’t need to repeat each time you post. Just go to your User Control Panel up top, hit the Profile tab and the the Edit Signature tab.
This can be edited whenever you want and will reflect changes in all one’s own posts on the forum.

One thought that came to mind, as a past LDN user is that there is quite a bit of anecdotal evidence to suggest that chronic underlying candida can also cause LDN flares, as can Lyme disease, in some cases. You may find more info no all this on the LDN support forums…here’s a couple that I quickly pulled up:

http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=303

http://www.ei-resource.org/community/eir-community/groups/viewdiscussion/9-ldn-ldn-and-candidayeast-flares?groupid=4

I tried LDN for about 10 months in slowly increasing doses (2mg and working up to 4.5mg) and I did herx on it within the first month or so, but I ultimately had to stop it, because it was causing severe night tremors. I do have Lyme disease, though, so this may have been a neuro-herx of some sort…I just wasn’t ready at that time to take that on board, though I haven’t ruled out re-trying LDN at some stage in the future.

Detoxing, especially in the early stages while herxing, is so important with AP. There are loads of methods for doing this (I’ve listed ones that have worked for me in my Personal Progress Thread – see link in my sig line). Everyone will find what works best for them, so a measured approach in trying one thing at a time can help.

Extreme hypersensitivity can be managed in the early days, as I think Phil suggested, by switching out to doxy and starting out low and slow after a few days washout period, because minocycline is believed to have superior tissue penetration. I have a transcript of a talk Dr. Brown gave on the issue of hypersensitivity and how he managed it, if you would like me to send you a copy?

So sorry to hear that Dr. R. K. in Lufkin was unable to accept your insurance and refused to take cash. That is a bit strange, considering many folks don’t have insurance and will pay cash or will pay cash and claim back what they can from their carrier for out-of-network doctors. Was an explanation given for why cash payment was not acceptable?

I do believe Dr. B. B., one of the LDN gurus does use a combination of both minocycline and LDN in his RA patients (I recall seeing a Youtube video of him talking about this combo), so perhaps he will be a good place to start, but if you should need IVs or combination abx at some stage, you may need to look further. I understand that Dr. R. K. has just begun rxing IV clindamycin to her patients, so this is such a shame.

All in all, it sounds like you’re talking some great steps to support your treatment, Leslie! Hang in there…there are answers for most problems and it can be a bit of a puzzle to work things out in a gradual way. If needed, there is one very experienced rheumatologist out in Riverside, CA to whom many will fly for a comprehensive initial work-up and he will test for all sorts of infections, run all the rheumy labs and imaging studies, to try to piece together an individual’s puzzle.

[Michele]

Hi there,
I was one of the hypersensitive two that Maz is probably talking about. 🙄 You have a lot of great responses from many other people. I would like to tell you that Dr. S in Iowa had me go down to about 6-10 mg of Minocycline and I was still herxing too much. Hind sight being 20/20, it wasn’t until I did multiple forms of detox before I could tolerate antibiotics. Everyone seems to have their favorite detox and you are already doing great by managing your diet. I still follow that diet (except I was bad a few times over this Christmas break.) For me, the coffee enema was an immediate relief for the pain. My pain was caused by the build up of toxins and by adding any antibiotic, I was only adding to my toxic burden. FIR sauna made me sicker. I think because I was too overloaded with toxins. Even Dry heat saunas made me sicker at first because I was so toxic. Now I can sit in a sauna for 30 minutes and feel refreshed. Another detox method that works for me was the ionic footbath. My massage therapist has one. I was so toxic, I couldn’t handle massage. In fact, it can still flare me. But I can at least have them now.

You mentioned dental work as your possible trigger. That was certainly my final straw that broke the camels back to trigger my huge flaring disease. I had a mercury amalgam filling replaced with no assistance from a ND or a biologic dentist. I clearly can remember every dental procedure and the affect on me.

Some people have problems with detoxing because of their genetic makeup. My current doctor did a genetic profile on me and I miss a gene to detox. That explained a lot of my early AP misery to me. When you take Minocycline, you have a die off (herxheimer) that creates more toxins. If the body is already at peak toxic burden and cannot because of genetic makeup rid itself of the toxins, you are only adding more pain. When my current doc has given me IV glutathione it helps a lot because the gene I lack is the connector between glutathione and the free radicals and toxins. If I recall, that genetic test is by Genova Diagnostics.

My current search involves checking into Naturopathic doctors. Does your state allow ND’s to practice? So far, from what I’ve read on ND websites, they seem versed in detoxification of all kinds.

Bottom line. I think you are on the right track, but need to find more successful ways to detox. The lemon / olive oil drink and Epsom salt baths alone did not assist me enough with my detox. Keep looking for other detox methods. It took me two years to try that coffee enema because of it’s lack of appeal…but now when I hurt…it’s one of the first things I go to. Once I had multiple successful detoxification protocols in place, I have taken multiple antibiotics at one time and have had little problem with herxheimer reactions.

I am so grateful to the wonderful people on this website that helped me through my most difficult start to AP 5 years ago.

Michele

[Maz]

@Michele wrote:

Hi there,
I was one of the hypersensitive two that Maz is probably talking about. 🙄

Hi Michele,

Thanks so much for chiming in…yup, you were reading my mind, as you were on my mind when I mentioned this and your insights for Leslie, as one who has “been there and done that” will no doubt be invaluable!

Thanks and so glad to hear you’re doing so well! 🙂

[threefays3]

Many thanks for all your help and suggestions. I changed to doxy on Monday and have now taken two doses – herx is so much more tolerable. A big thanks to you, Phil! I

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