Well, I added half a Biaxin (125 mg) in the evening without too many symptoms and was contemplating adding the rest to get my dosage up to 250 mg twice a day, as you all recommended. I keep stalling because we are in the midst of trying to be approved for adopting an older child, and I don't want to be sick when I'm trying to do the necessary tasks.
Anyway, a couple days ago I started having a little bit of a rumble in my stomach, then I woke up with bad acid reflux which I haven't had for a long time since I started meds. Well, I did have it once after I started, my doc told me he didn't think it was really acid reflux (don't have a clue what he thought it was or what he meant) and it just went away in a few days. So, I figured it would do the same thing this time, but it just keeps getting more painful.
I'm taking a proton pump inhibitor (acid stopper) and gaviscon and more stuff, and it seems to be getting slightly worse, at least certainly not better. Also, my skin showed inflammationi as I had itchy spots that turned really red (a previous symptom), my glands hurt (something that has been going on a lot before and especially after starting CAPi), and I started aching again in my body all over(kind of like fibromyalgia, but kind of like when you have a flu).
At first I though this was my fault because I ate a lot of sugar for a couple days and stressed my self out over something, but now I'm starting to think it might be a delayed inflammation/die off, because I do not have the flu, but I ache everywhere in addition to the acid reflux, and everywhere I hurt including my esophagus IS something that was a problem before. It's so confusing, because last time I increased my meds, I had flu symptoms, but this time it is a completely different problem. It's so hard to figure out what is going on with this stuff. Are these more die off symptoms, only different this time? Or just some weird set back.
I've read many of you talk about retriggering of MS symptoms, and people having NACi flu. Do any of you who have had digestive track problems have sudden and severe recurrance of these during treatment? Are these possible die off symptoms even though they are different? I'm tuffing this out in hopes that is what it is, but as many of the rest of you have mentioned, it makes you second guess what is happing and what to do, and is kind of scary. I'm hoping you all will say, don't worry, this is normal, but I don't want you to say it unless you really have experienced this yourself and really believe it is par for the course.
When I increased my Biaxin, I also started getting hot and cold feelings again and feeling tired. The hot and cold stuff confuses me because I'm about menopausal, but this stuff only happens when I increase meds, then it goes away. I know it was only a little increase in Biaxin, but that's why I'm going slowly, because I'm pretty scared of the side effects.
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Memphis,TN - FMSii, IBSii, rhinitis, depres (~20 yrs) CFSii, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPnii titer 1:256. CAPi 6-07 Current NAC 2400mg; doxyii 100mg x2, Biaxin 500mg x2, pyruvate, supplementsii.

Memphis,TN - FM, IBSi,
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni titer 1:256. CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 375 mg
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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256. CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.
Oh, I forgot to say that I
Oh, I forgot to say that I added the Biaxin about January 1, and started having the reflux a couple days ago. Other than that, all I remember is a lot of hot flashing feelings and tiredness, but I actually have such a poor memory now, that I probably am forgetting other side effects that have occured. Oh, yah, my jaw (which seems to get worse and better with meds, got really sore again and my right gland, on the same side as the sore jaw, started hurting all the way into my ear.
My right jaw used to pop (for so many years I can't remember when it started) when I opened it, but did not hurt much. When I started abx, it quit popping and became very very sore. It gets worse and better, probably related to med increases. Everytime I think I'm going to have to do something about it because it is really getting bad, then it becomes a lot better again. It is really weird, and must be related to CAPi. I guess I got TMJ, more or less, in that area from CPNi, and the CAP is inflaming that area, but hopefully fixing it at the same time! That's my hope any way, as my right jaw, ear, gland, etc. always seemed to be worse than the left, and they are becoming very sore, off and on, on CAP.
Reve'
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPn titer 1:256. CAP 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 250 mg
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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256. CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.
Reve, Nice to see you
Reve, Nice to see you around! Thanks for the memories of long-forgotten TMJ! When I was in my late teens, I had all the x-rays, etc., due to painless jaw-popping. (Though if I did it deliberately a few dozen times, there was dull pain.) I was told it was stress and misaligned teeth and nothing could really be done about it. It lessened and disappeared after a couple of years.
Then, on antibioticsi, somewhere around the two month mark, it came back on and off for a few weeks. It was less 'there' than it was a memory of the feeling. Not full-blown, just a 'tickle' of how it used to feel and I was worried it was going to rear its ugly head again, but it didn't. Come to think of it, this must have happened right when I did flagyli the first time.
I can't even induce it deliberately anymore. Gone. Poof. (I hope that gives you hope.
)
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
MacKintosh, So, do you think
MacKintosh,
So, do you think TMJ comes from CPNi? Funny, mine never hurt (of course, like yours, a little if I popped it a lot. I learned to be careful if I yawned!) much at all. But after starting abxi, at some points it hurt so much I almost could not chew. I just ignored it though as I had too many other things to deal with, CPN wise. I just thought it was quite amazing that right when I started abxi, it totally stopped popping (after it had popped for YEARS). But unfortunately it started to hurt like heck. I figured out that if I took i b profen, it helped to reduce the pain. Now it is only mildly pain, but it changes.
Reve'
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPn titer 1:256. CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 250 mg
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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256. CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.
It doesn't sound likely to
It doesn't sound likely to me that tmj is caused by cpni. It is caused by stress -- it's a kind of muscle spasm and valium is often prescribed for it. Valium is also prescribed for msi spasms and insomnia so I kill 3 birds with one stone (horrible metaphor) when I take it. In my 20's I had my wisdom teeth removed to ease my tmj and then I started taking valium for it in my late 30s. Finally, I now use a mouth guard. I do think it's from stress and you aggravate it during sleep by grinding or clenching your teeth. So if you ease it during sleep with a muscle relaxant and a mouth guard it should improve during the day.
Nancy
PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.
I wonder. My tmj started
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Ella had a bout of TMJ which
Ella had a bout of TMJ which lasted a couple of month about a year into treatment, it has gone now... Never had it before... I have had some jaw pain and the occasional popping joint, but most of my mouth discomfort came from aching gums and teeth, that is also much better now. What still troubles me on a regular basis is the oesophagal pain. It gets worse and is constant during flagyl pulses, although since starting the Rifampicin this has been more bearable. Strangely, when I first started the Rif, it actually brought on the heartburn in a similar intensity to Flagyl, but that seems to have stopped now.
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Mac I do not think you are
Mac I do not think you are far off with the tmj cpni causes inflammationi and tmj is exacerbated by inflammtion as are many ailments. BarbaraNAC and glutathione push for years Lots of supplementsi (all supplementsi in protocol)IV vitamins b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 MSi flagyli 1day 500x2 11/23/2007
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NACi and glutathione push for years all supplementsi in protocol)IV vitaminsi b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008
Research has linked TMJ
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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.
http://www.ncbi.nlm.nih.gov/
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zero negative sjogren's diagnosed 2/03, 200mg minocin daily, biaxin,plaquinel mwf, flagyli every 3 weeks.
Well, I always, since
Well, I always, since childhood, liked to wiggle my jaw and clack my teeth to imagined songs which can't have been good for the jaw. As a kid i also liked to pop my jaw. But it only really became a problem in my late 20s after I fell down a flight of stairs and dislocated my jaw (falls in the category of being bitten by a cat). It never quite healed and so the wisdom teeth were pulled to help it heal. And when I bit through a gold crown it was decided that I was also clenching my teeth in my sleep. I've realized recently that by keeping my mouth shut during sleep I better enabled myself to breath through my nose -- i.e. a sinus problem. So it could be a combo of reasons for tmj that may or may not be directly or indirectly caused by cpni. And while the CAPi might eventually help with it, for the nonce i would still recommend a muscle relaxant and a mouthguard. Totally empirical. It works and it won't do any harm.
PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAP 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.
Thanks for input. I woke
Thanks for input. I woke up this morning and felt like I had the flu. I am not vomiting, but just that terrible feeling all over, hurt everywhere, as I have been doing since I got esophagus pain. I just have pain and inflamation everywhere and feel like crap, the kind where you want to stop taking your meds because they may be the reason, or want to stop taking them because you feel like you are going backwards and they aren't working anymore.
My sister said just ignore it and don't worry about it. But I'm here to visit, and it's no fun, and I have to drive back to Memphis in a couple days, and don't want to have to drive that far feeling like this. Sure wish I could time these side effects better. I'm trying to increase dosage when it will be the least problem, but evidently not doing a good job. Last NAC flu was Christmas day and I did stop meds then for 2 days. Now it's on vacation.
I wish I knew how long it would last. I need something to make me feel better mentally. It's hard to believe that only 125 mg increase in Biaxin could do this. I'm not even up to the regular dosage yet. I still have 125 mg to go to be at the lowest normal dosage level. I wish I knew for sure that this was me getting better and I wish I knew when the "symptoms" would go away, to give me something to look forward to.
I'm such a whiner. (How do you spell whine, wine... it just looks wrong). I can be determined to an extent, but unfortunately I'll probably whine everytime I get sick. I guess that's my coping mechanism, but it probably isn't the best one. So, I'm off to visit a friend, slowly. She wanted to go out to eat. What a joke. Every little thing, even water, hurts too much to go down. The irony is that I haven't lost my appetite!
Reve'
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni titer 1:256. CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 250 mg
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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256. CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.
A few years ago, my
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 48 pulses NC USA
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA
I doubt I grind my teeth.
I doubt I grind my teeth. I had a sleep study (for fibromyalgiai) and all was normal. If I ground my teeth, I believe they would have mentioned it. I have no dental evidence of teeth grinding. What I do have, though, is inflamed muscles, well, inflamed everything, and I had sore gums, too, a lot, and I KNEW it was related to fibromyalgia or at least sinus problemsi inflaming them because it always occurred together, and the dentists had no clue since it wasn't any reason they could figure out. They said not to worry about it; that it was not any big deal or anything very bad, maybe just some minor misalignment due to an injury or something (I didn't have an injury).
If I had to guess, I'd say CPNi got into my muscles, etc in that area and tightened them, like it does in all muscles in fibromyalgia, and then the abxi inflamed everywhere the CPN were, hence only a slight pop became extremely sore at the same time the rest of me was having side effects. I could be wrong, but it makes the most sense, for me at least. For others, TMJ could be from grinding teeth. It could have multiple causes.
All I know is I don't care much about my jaw now. I went from getting better with almost no inflammationi to becoming a poster child for inflammation, all over my entire body, all in a few days! Makes the jaw part only a minor problem for me right now. Ironically, it is a little better. Who knows, maybe the abxi already reached the cpn in the jaw and got rid of some of them?
Setback, or plowing forward? Hoping for the latter. I still have strength, something I got back to a degree and have not lost, just feel tired and in pain, but can do stuff if I have to, so that helps me believe this is not really a setback but only seems like one due to die off.
I'd really appreciate it if anybody could give me their experience on the following:
Anybody have an average time for die off to occur after one increases dosage? Seems like from the few posts I've read, it can be around 3- 7 days, yet might take a few weeks? Would 3 or 4 weeks still be possible for a die off to suddenly occur after increasing dosage?
Anybody know how long NACi (or in this case, Biaxin, like Azithro) flu usually lasts, or at least a range? I need someone to throw me a bone here. It doesn't have to be very correct, just encouraging!
Thanks for all the comments and help.
I did not intend to bold the above, but accidentally made it bold somehow, and cannot seem to make it UNbold! So, I was NOT trying to emphasize anything. I just can't get the bold button to undo it!
Reve'
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPn titer 1:256. CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 250 mg
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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256. CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.
It could indeed be the
It could indeed be the flu. I had a nasty stomach flu, body aches like I haven't had in years and stomach pain too. I didn't eat much for 5 days, including no abxi as I have to take many with food. So if it's the flu, you have to decide what your body can handle.
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
whine PPMS-misdiagnosed 5
whine
PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.
Inflammationi is one of the
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Thanks Jim K. but I'm pretty
Thanks Jim K. but I'm pretty sure it's not the real flu. I did get a stomach flu a couple months ago and figured out it was not CPNi kill based on various factors. I was oddly happy to get the stomach flu and know it was something "normal" for a change, and get over it in a few days "for a change".
I think that this time it is either my illness returning (less likely, but scary) or CPN kill causing inflammationi (hopefully more likely, definitely more preferred) like MacKintosh mentions above. I just seem to have no good judgement on how much increase will cause how much side effect, or how long it will take. So, I'm still erring on the cautious side when it comes to upping my meds.
I thank everyone for letting me whine a while and I thank you for your comments and insight, as all were interesting and also helped distract me from feeling bad. This sight is medicine for my mind like abxi is medicine for my body. I'm feeling very fortunate to have such great resources as this web site and such a good group of people to talk with. So much better than doing this in isolation.
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPn titer 1:256. CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 375 mg
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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256. CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.
I am pretty convinced also
I am pretty convinced also that TMJ is caused by cpni...mine started in the same DAY that I got sick, very suddenly like everything else...I had never had jaw pain before and all of a sudden it hurt all the way down the sides of my face and in the ears...just inflammationi I guess...I found that acupuncture has helped a lot...
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Gearing up to starting abxi protocol from Dr. powell.
Initial diagnosis of Interstitial Cystitisi (july 06), progressed to all over falling apart syndrome within the past year. Current supplementsi/meds: sublingual B12, ursodiol, Niacini, NACi 1200 m
Yes, my sister who has a
Yes, my sister who has a similar cpni titer to mine also has had tmj problems, but a dentist worked on her muscles in her jaw and her arm and evidently loosened them, kind of like a chiropractor does, and made the tmj go away, at least for awhile. I forgot if she said it came back again, but it probably did. So that is something interesting to think about. If I up my meds and it gets bad, I can take i b profen and it gets a lot better.
Reve'
Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPn titer 1:256. CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 250 mg
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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256. CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.