Minocycline (yowee what a herx!)

Don't feel bad, I have a couple of expired bottles of Minocycline that I was "discouraged" from taking, and also because I didn't think my family would understand how bad it gets on that herx. I did a day or two of Flagyl and Mino and it was strange and psychologically terrifying, though I don't doubt the power and efficacy, just want to pick the right time to begin again. Still not sure what to do with expired capsules, as I have heard mixed messages on if they are still ok to use. They look ok, like new and have been kept in a cool temperature controlled room away from sunlight. Anyway, hope you can get those neuro symptoms taken care of.

Borreliaburgdorferii: Thanks so much! As much as I hate these type of herxes I really do feel encouraged that the med seems effective. Part of me is frustrated to rediscover my old friends (symptoms I thought were long gone), yet on the other hand it shows I still need to tackle some remaining pathogens and at least for now I've found another effective tool (mino).

Oh yeah, I think with capsules they play it very safe with huge margin in regards to expiration. I've taken expired stuff a few times (it was an expensive med and didn't want to have to reorder it), and it was still effective.

It's very hard to herx like that with others around, especially if they don't understand. I can hide my physical symptoms and ignore those more effectively than I can the psychological and head herxing. That stuff is more overbearing and harder to mentally coral and compartmentalize. Personally I need a lot of mental support, or to at least feel support when I go through this type of herxing because I get very mentally shaky. I need to talk it out. But I'm sure it is tiresome listening to me talk in those circumstances, the symptoms are so overwhelming that it's hard for me to talk about anything else. And I keep a running pep talk to myself in order to stay motivated and encouraged, it's goofy but it kind of helps.

NicHostetler: I'm sorry to hear you've been slogging through that experience with this med. I don't know what your herx patterns are like, but for me I've def had indefinite herxes with meds that are continuously effective (some meds taper in effectiveness and herx subsides along with that, that's my feel for how it works in my case). It could be squarely hitting the pathogens, and given a certain large enough load it takes time to whittle away but each dose keeps hitting something? It's tricky distinguishing herx from side effect, but to me it's the combo of one's responses. Getting dizziness, fatigue, neuropathy, brain fog, headache would really make me suspect herx. If it's only one of those things it'd be harder to say. Your symptoms on mino are very close to my own, they are suffocating symptoms. In our cases, sometimes it's worth exploring pulsing or mini-breaks to see if that helps, or at least help us catch our breath. I often have to figure out pacing with the meds that make me herx the most, otherwise I'm more liable to mentally burn out.

Sebreg. yes, I had the same reaction to Mino. And this was even when I had been on Doxy on and off for a few months.

What I found about Mino is that I herx and feel its benefits within hours, versus 3 or so days for Doxy to kick in.

With doxy, I get the same pressure headaches, same herx and same side effects, but more gradually because it takes longer for it to build up in the blood.

With Mino, like you said, it is like getting hit with a 2x4 a few hours after you take it. And it doesn't go away that quickly either. What I had to do with Mino was to take half a pill in the morning, the other half in the evening. Next day i would just take half a pill. The next day i would repeat with a full pill split in two. That was the only way that I could tolerate the herx, side effects and symptoms.

Eventually I had to give up on Tetracyclines altogether because my joints, muscles and nerves get inflamed so badly that it feels like the muscles are being pulled from the bone whenever i use them. Stopping the Mino/Doxy relieves the symptoms in about a week or so.

Not at all, I don't mind answering. I have done herbal treatments exclusively at this point. I use my disease as a way to learn more about herbs and their potentials so I'm not exactly in a rush to push through it. I am opening up to abx a little more though as I've been hitting a bit of a wall lately. I had a script of mino once and the black thyroid thing scared the crap out of me so I just didn't take it. Silly though... apparently knotweed causes black colon so pick your poison lol.

My remaining symptoms are just very very very faint neuropathy in my legs. Just like a slight achiness. And PVC's. Honestly though, I haven't had many since I stopped knotweed. And they started when i started knotweed... So I'm wondering if they were caused by knotweed and not my disease. So symptomatically I'm at like 90%+. Sometimes I get a random muscle stab or so but not much. My big problem is just relapsing every time I stop.

I'm thinking about giving one more stab with an ID doc. Not mentioning Lyme but just telling him that I feel like 70% improved on antibiotics and see if he/she comes up with anything. If he/she can point to anything definite I'll take the abx. But if I'm just going to gamble on unknowns I've got a few herbs to try first.


Which antimicrobials have you been successful with?

Rikky1 how long were you on the mino...? When/if you stopped did you stay better or relapse?

Psilociraptor: That's fantastic that you've reached 90+%! huge accomplishment. Sometimes I wonder if nailing that final 10% can be a bit tricky, especially in longer standing cases. I've always liked researching to build up a framework of potential things to try if current therapies lose effectiveness (which tends to happen therefore I have relied on a lot of protocol rotations). Given my situation where I have bartonella, babesia, borrelia there's been a range of effective meds. The ones that particularly stand out for me: ivermectin, alinia, malarone (these first 3 I'm guessing all hitting babs), pyrazinamide, minocycline.

In regards to herbals some of the best ones for me have been CSA from Woodlands essence, allicin from Zhang brand, houttuynia, buhner herbs, tick slayer's essential oil combos for the infections.

I didn't know that potential side effect of the mino! I was channeling most of my side effect worries towards the grey teeth/gums one!!! Wish I didn't have to take so many risks with all these meds, but given how badly I've been affected by these diseases I'm willing to tolerate a moderate/high level of risk in treatment.

Rikky1: Fantastic, thanks so much for sharing your experience, that is very encouraging! Given how hard it hits me I suspect it's going to prove very beneficial. It's just that initial period where it's doing a lot of heavy-lifting is going to be the challenge. It's easier to stick with a med though when I can sense it is going to be potentially very helpful in knocking back some of my most aggravating, tenacious symptoms. And very helpful to hear this is the case for you. The problem with these head herxes is I have trouble distracting myself and getting through the day, but I'm sure it will improve over time, I've only taken the med a few times so far.

Oh yes, I've run the gamut for sure! def been more willing to try things because I've been so heavily affected, I'm pretty much certain pathogens are still playing a role in symptoms (given the herxes and nature of remaining symptoms), and desperation can also sometimes open us up to taking greater risks (which obviously can be problematic if one isn't careful).

I usually have a basic 3 point thing I think about when evaluating meds: how bad are current symptoms, how potentially effective is this medicine going to be, how risky is the med in terms of serious side effects. I also really want to slay this demon (as much as possible) because I think the more we can control these infections the greater chance we have of sticking a long-term remission and preventing future reemergence.

Fortunately I really like my doctor, he's helped me a lot. I trust his judgement and he has helped confirm my situation with the infections. Of course that doesn't mean he is right on everything (given the nebulous nature of these infections it's hard to operate without some guesswork). I try my best to research any therapy proposed because imo each patient needs to evaluate and research medicines to understand potential benefit/risk, and then figure out if they are comfortable with proceeding based on that. Doctors cannot fully sketch out the risks (don't have time and sometimes depth of knowledge of each particular medicine!), which is why I really think patients must be pro-active. Plus we need to know what to look for in regards to problematic side effects.

Given where you are at (not sure if tickborne infections are still at play), it could be worth trying a few doses of a broad-spectrum antimicrobial that you haven't already tried (maybe even the minocycline) and seeing if you get a response. It sounds like you usually have gotten herxes from effective meds, and if that's the case it could confirm you still have underlying pathogen load playing a role in remaining symptoms. Plus when it comes to some of these drugs like minocycline, it seems the risk of serious side effects usually is more likely to crop up in the circumstances where the patient has been taking the drug for a longer period of time.

(thanks for the heads up on the vitamin c, just got some the other day!)

Ah gotcha! yeah I'm a bit cavalier when it comes to that stuff, and rely on a lot of trial and error. I end up figuring hey I'll probably never know with highest degree of confidence the exact mix of pathogens/strains at play and which one is doing what. That's why I'm a bit of the shot-gun approach mentality with meds that have broadest coverage possible, and whenever things plateau try to figure out some sort of rotation in the protocol.

If you can avoid abx that is always ideal. Exhausting herbal options before trying abx makes a lot of sense to me, especially if herbals have gotten you to 90+%.

Ditto> I gave up on mino last year. I couldnt cope with the herx!

>>I'm looking for broad coverage and shotgun approaches as well just from herbs mostly.

while there is research out there for various plants that exhibit antimicrobial activity, the most research and case history is using pharma abx's. understand they don't work for everyone and some don't want to chance taking them for a variety of reasons but they still have the highest success amongst the different modalities.

hopefully more research and further usage of all modalities will make the picture clearer on what is most effective for what pathogens, type of person, etc.