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I am 34 years old and have been taking Mino for 9 months now….I started with 100MG MWF then after 2 months increase to 200MG MWF. I also take a Probiotic. My GP is prescribing Mino as per my request, he had read some material that I gave him BUT is no help when problems arise. I had no problems taking mino until about the 7th month. No herx nothing I was surprised, I was very happy with the results, the arthritis, is mainly in my hands and feet and wrist, that is where most of the swelling and pain is. The mino had worked drastically in reducing the pain and swelling. Absolutely no pain I no longer need to take Celebrex.. Then all of a sudden I began feeling sick…..I mean very nauseous all day long no letting up, unbelievable. I thought on those days that I felt like this I was coming down with the flu, then the next day fine, nothing, felt great. I thought that since feeling sick seemed to coincide with the off days of taking my mino that it was the mino that is causing this intense nausea. So I went off of it for a week, this seemed to let up. Then went back on the mino, but lowered the dose back to 100MG MWF. Same thing felt very sick, but now every day feeling nauseous, can not take the nausea. So now, back to not taking the Mino this week and am feeling much better…..Also one other thing that has been happening is I wake up in the middle of the night feeling extremely HOT like I am fevered, but no sweats and I feel very sick like I am going to throw up, this also subsides when I am off the Mino.
NOW I don't know what to do has anyone felt this sick (Nauseous on the mino this far into taking and what do I do as I can not bare to take the mino and feel this sick. Is this a herx so far into it or could something else be going on. I need to do something as I can't be off the Mino for to long already noticed pain in my hands and feet after being off the mino for 1 week. Am I allergic to it and might need to try another antibiotic…. what please help…..:headbang:
Sounds like an allergy kind of thing.
I have heard of this from people taking mino for non-rheumatic diseases.Before you despair, remember there are other abx's out there. Like doxycycline, zithromax, etc. So, perhaps you could ask your doc for doxy and start slow (50mg).
You could try an even lower dose of mino. They also come in 50mg and then slowly work yourself back up to the higher dose. I don't think it is an allergic reaction after being that long on it and on 200mg.
Maybe have a complete blood count done (check for liver and kidney function) and also have electrolytes checked?
Taking extra Vitamin C (at least 1000mg per day) sometimes helps nausea and so does drinking Peppermint tea. I can only suggest and hope you'll find a way.
Maybe you have developed an ulcer. Try taking the the mino with a piece of apple or something. Ask your doctor about peptic ulcers. A proton pump inhibitor like Prilosec, Nexium, Prevacid, etc. is usually prescribed
I have been diagnosed in the begining when this all started(the nausea)with gastric problems and was prescribed with nexium and taking it. This workd on the nausea for a couple of weeks. Then it came back. I do try eating crackers when I take the mino but nothing works, the nausea is so overwhelming. This is why I wasn't sure if this was a herx or an allergic reaction. This obviously is a mystery. I feel very discouraged. Doc did do blood work to check my liver also I had my blood sugar checked and an ultrasound of my abdomen, everything is fine!!!!!!:headbang: The only thing that is true is that I feel better while not taking the Mino, but my arthritis will come back if I don't take it….so now I am back at the beginning. I am not wondering if I should call the doctor in Iowa as my last resort. The problem is is that I am from Canada and I have to pay for all the costs…..
Rhonda – If you dose on alternate days and experience the nausea on 'off-dose' days that makes it very likely that you are having a herx. You can have herxing that is in tissues other than the disease that brought you to AP. Lots of things could bring that about, even 9 months after starting AP. I agree that disabling nausea is too much. If indeed this is herxing then it is good, not bad, but you'll want to change things until the herx is tolerable. You get to define tolerable, not someone else.
Just to get the feel of things you could dose once or twice a week for a while to work out the cyclic nature of this. You might consider 25mg. Be sure that you are drinking lots of water. The tetracyclines are dehydrating and that can cause odd side-effects that are quickly cured with an 8oz tumbler of water, or two. Many of us with rheumatic disease have funky thyroid or other glandular problems. Lots of hormonal issues can be affected by our disease and this may lead to your discomfort. I would like to recommend that you try a very dark environment for a few days to see if this eases your nausea. I know that most people think that light sensitivity is only a Marshall Protocol phenomenon but some AP'ers have experimented with light exposure and discovered that they are indeed light sensitive. The problem is that it takes at least 48 hours of darkness to work this out. The half life for hormonal changes due to light sensitivity is around 6 hours and it takes 3 of these half-lives to return to a non-affected state. Could light sensitivity cause nausea. Yes. It can be evidenced in a variety of ways including nausea. If you are sensitive does it mean that you have to live in the dark? Maybe not, but if you discover that you are light sensitive it would be nice to know. Why just on Minocin? Because that is when you are killing the bacteria in that particular organ system, making you sensitive (if you are). Any advantage to killing bacteria that are not in your joints? Depends on how you feel about hosting bacteria in those other tissues.
What else could it be? It might not be light sensitivity but I would still bet that you are killing microbes in some organ system that in turn is causing the nausea. If you switch to Zith or clindy you might get some relief. Then again if he Minocin is effectively clearing bacteria then eliminating the herxing might not be a good thing.
This is where some cool, medical omniscience would be helpful. Who knows what is really going on at the molecular level in your body. But I highly doubt that you are allergic to Minocin, especially since for some time your response was on the off-dose days. I simply don't know of any better explanation for off day response than herxing.
Good luck. -john
Rhonda,
This exact thing happened to me. I was great on Minocin for about 9 or 10 months, then I got hit with the nausea, which I had a little when I first took it, but had been fine for months. I was daily dosing at the time. I dropped two days and week and felt wonderful. But the pain returned. I have been battling the two since, but for the most part the nausea went away again after a few months of dropping those two days. I have worked back up and am daily dosing again with no nausea. Now I am hoping the pains will go away again, but it is too early to tell.
You have to wonder why a side effect would pop in and out like that, so I kind of suspect some kind of Herx. I think the joint pain I have been having is that, too, and it will back off again. I am going to move forward with the Marshall Protocol because I do not want to remain at daily dosing if it is only keeping the pain at bay with such a small margin. Since you are pulsing, it seems like you have some room to tweak the doses. The nausea may disappear again with some minor adjustments. Good luck!
P.S. John McD has some good suggestions and is a wealth of ideas for tweaking the variables! I used them to get through the nausea.
Hi Rhonda,
Only a suggestion, but have you tried apple cider vingegar for your nausea? Apart from being equalizing the acid in the stomach, it also has antimicrobial properties…so, if you're herxing in your stomach, this may well help with this, too. People report good results with this, even pregnant women experiencing morning sickness.
http://www.disabled-world.com/artman/publish/apple-cider-vinegar.shtml
Another thought that came to mind is that it may not be remiss to get tested for H Pylori. Sometimes these silent secondary infections begin to raise their ugly heads once the primary one is being dealt with successfully. The topic of H pylori comes up occasionally on this board and studies have shown that RA patients treated with clarithromycin for H Pylori often have regression of their joint symptoms. Unable to post the study right now as my usual laptop that holds all my bookmarks to studies needs to go into the repair shop. However, you should be able to find these studies relatively easily on PubMed if it's of interest. I had a look on the RBF site, as I thought it might be there, but was unable to find it.
In any case, the apple cider vinegar may be worth a try…it's fairly innocuous as a home remedy and can't hurt. Some people also mix a tspn of baking soda with one tblspn of apple cider vinegar in a glass of warm water, but have never tried this particular combo myself, so would probably just stick to the APV to start.
A Friend also posted some good info on supplementing with HCL (hydrochloric acid) couple weeks ago, because for some people 'acid stomach' can be the result of too little acid, not too much. She also provided info on how to test for this yourself. It is probably further down the threads by now.
These are just some possible solutions, though…may take some time to work out what is going on…and hopefully this issue will clear up along with any herxing over time.
Peace, Maz
Thank you all so much, all your suggestions are so encouraging…this is alot to learn and take in… you think that you have a grasp on the situation and then something else happens…you read on this board and have more questions that before. John you seem to be quite knowledgeable and I have alot of questions now after reading your post….I had no idea that you can herx forever, I thought that it was in the beginning of starting AP and then it goes away, but I now understand it can be different things all the time. It seems that this will be something that we battle always:crying: something pops up here or there and we have to tweek it evey once in awhile. I have not even experimented with food and changing the way that I eat, and I see that this is a big part of Arthritis. It seems so overwhelming I don't even know where to start with the food thing, No Gluten.. no dairy… no this… no that… introduce slowly…. WOW,
SO anyways that is my long drawn out way of saying Thank you to all of you who reply to my posts and everyone else's posts… I have been reading on this site for over 1 year now and so much more to learn.
Thanks Rhonda
Rhonda – AP can be extremely complicated, but it can be quite simple too. I wonder if we each one of us complicates our protocol just enough to suit us. I pretty much follow the MP and not even all of that. That is, I follow a well defined and well described protocol that consists of 3 antibiotics, 1 ARB (another pill) and one dietary restriction. There are lots of other suggested dietary restrictions but mostly I ignore or mildly cheat on those. The truth is I don't have much patience for dietary experimentation. So I invest my interest in other areas. But others here have enormous interest (and success) with dietary experiments and they appeal to an overwhelming body of information. My point is that you can explore as much or as little as you have appetite for, but I think my protocol is actually rather easy to follow and that suits me.
I hope I don't herx forever. Boy do I hope that I don't herx forever. I stopped herxing on AP after about 14 or 16 months and by then I had a very substantial amount of improvement, but not a cure as the other thread goes. So I started the MP to see if that would lead to a full cure. But I didn't have to. I was pretty happy with my AP progress. It is just that I worried about a future relapse, or maybe the Minocin not working so well sometime ahead. So rather than face that sometime down the road I elected to start the herxing all over again, this time with another protocol. My goal is still to try for a full cure. I don't know if I will achieve that or not and the MP is still pretty new with just a handful of graduates. I like what I have gained so far, but I am still herxing on this other protocol. Do I want to herx forever? No thanks. But I seem to be making progress. My RA is 98% gone, by my reckoning. Through all of this I have gobbled gluten, nibbled nightshades, imbibed beer (occasionally), slurped sugar (some, not a lot) and, oh, I better quit.
This doesn't have to be overwhelming. My apologies for making it complicated. You will find your way and it will be reasonable to you.
john
John, what is MP, I have seen it on here quite a few times,…I want to look into the light sensitivity that you suggested.
Hi Rhonda,
Early in my AP at large doses I had nausea really badly. Ginger tea helped. But then I found I couldn't tolerate those high doses of Mino. The Iowa doctor is helping me with that.
There is a patient of the Iowa doctor who has had similar problems with Mino to you. After being on it for 8 months or so, every dose brought on severe flu symptoms and fever. Dr. S recently moved her to zith after tampering with the dose for some months.
It is my understanding he'll take phone appointments, so instead of travelling so far, try calling him first to see if he'll do a phone consultation.
Another variable is minocycline vs. minocin. I have much more control over the pelletized minocin because the Iowa doc has me on a really low dose of mino and I can count the pellets. Some people do feel they do better with the pelletized version in general. For some it makes no difference. But it might be something to try.
Hang in there!
Michele
Are you taking probiotics? If not, you definitely need to start immediately. Nausea is a symptom of gastritis and ulcers, as is the problem waking you up in the middle of the night. I was on nexium for a few yrs, but it lost effectiveness and I'm now on Protonix. It's not working great either.
But it could also be an allergy to the abx, as others have said. It's suspicious that the symptoms lessen when you stopped taking them. As stated in previous posts, there are other antibiotics. Hang in there,linda
The best gateway is at http://www.bacteriality.com, a web page by a CFS patient named Amy Proal. Amy has made the protocol much more approachable. Most find the main site very taxing to navigate. The main site is http://www.marshallprotocol.com. There is another site, I think it is http://www.curemyth1.org. Let me know by PM or otherwise if you need more answers.
-john
Thanks John for that info, does this site talk about light sensitivity, Now the reason I ask is I found during the last 4 to 5 years I can not bear to be out in the sun to long in the summer time, I used to be able to stay out in the sun with no problems at all now I feel very ill in the sun, head ache, dizzyzness I get tired it is like the sun zaps my energy right out of me. Not sure if this has anything to do with sun stroke which I got many years back or if it has something to do with light sensitivity……
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