Well, I've had an accumulation of fatigue, depression and profound brain fog. It took me a whole afternoon to do a writeup that should have taken me 15 minutes. I would stare at tasks I had to organize, and couldn't get my mind to go the next step. I attributed this to the effect of the continuous protocol, a build up of die-off, but it didn't respond to antiporphyrin measures.
Then I recalled that when I had been given neurontin for sleep, it worked great for this purpose, but after a month of use I had a very similar day time reaction: brain wouldn't work, I couldn't put together rather normal and familiar ideas, and felt depressed. I cleared within days when I stopped.
So I finally recognized that this is a flagyl effect, recalling Sarah saying how flagyl produced depression and tearyness for her. I'm skipping a couple doses to get back a base line, and will see if Tini has similar response in a continuous protocol. It may be that I'll find a way to alternate the two, say two weeks of tini, one week of flagyl. All I know is that some affect additional to the antichlamydial effect had a gradual build up on it for me. Such complex creaturs are we.
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CAPii for Cpnii 11/04. Dx: 25yrs CFSii & FMSii. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim, there is something in
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Thanks, Sarah. I am
Thanks, Sarah. I am thinking more along those lines of 2-3 weeks on and some days off. I'm going to see how fast this reaction clears and then experiment. Already, having skipped 2 doses (last night and this morning) I'm feeling better, but the emotional blunting and pall is still lifting. It will be interesting to track how long this takes tol get a sense of the needed recovery time.
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyli daily (Continuous protocol)
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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
Hi interesting
Hi interesting observations, and good that you knew how to look for and treat for porphyrins and knew this was not at issue for you. I'll look forward to your next input!
marie
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplementsi.
"Color out side the lines!"
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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Currently on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, back to pulses of flagyli winter '08 all supplementsi. "Color out side the lines
***
Sarah my reaction changed
Sarah my reaction changed too. I used to have zero side effects from nitroimidazoles. After over a year of continuous use, I started getting the taste. Not from getting some dissolved in my mouth while swallowing the pills; rather, it's after the drug is absorbed systemically - about an hour after ingesting it.
It's overwhelmingly gross at 2000 mg a day. I've tried dulling my taste with painful concentrations of hot peppers, and I also tried keeping hard mint candies in my mouth all day, but it remains unbearable, as vexing as a headache. I mean, I could handle it for a few weeks, but not permanently. Fortunately, I don't have the taste at all (or rarely a hint) if I take only 1300 mg or so daily.
This all seems very silly. How can something like this start up all of a sudden, when I never used to have it. Yet it's been perfectly consistent for months now.
I've always suspected you
I've always suspected you of bad taste, Eric, now it's proven! Seriously, seems like tissue saturation to me. But why just tasting it now? Go figure.
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyli daily (Continuous protocol)
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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
Jim - I know the one doctor
It's actually the original
It's actually the original protocol from Dr. Stratton, and he still thinks that it's the most effective one, as there is no route of escape for the Cpni. Dr. Stratton also noted that some tissues may not be reached as well without tissue saturation for longer periods. He has likened Cpn treatment to that of TB, requiring an extended treatment period to assure erradication.
A couple of blogs (I think?) ago I explained my rationale for going to continuous Flagyli/Tinii: I had seemed to reach a plateau of improvement and reasoned that the increasing cryptic load was having an impact. I would argue, at this point, that anyone with 24+ pulses who is still symptomatic or exhibits die-off when pulsing should consider going to continous protocol, as you reach a kind of diminishing returns. And if you are still symptomatic, you may not be getting enough Cpn kill of some tissues to actually turn over new cells.
As we are the "pioneers" (I'm beginning to hate that accolade), we have to discover for ourselves what protocol will do the trick for us. Sarah did well with the pulsed protocol, and is now directly onto intermittent therapy. You somehow got through the "all out" version and killed it dead! At some point, if the pulsed protocol is only maintaining a level of functioning but one still has reactions, then you have to up the ante.
CAP for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyl daily (Continuous protocol)
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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
Re the bad taste, was it
Michele: Wheldon CAP1st May 2006 IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMSi Cap Started 16 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
Eric, I have never taken
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> Re the bad taste, was it
> Re the bad taste, was it Ron who suggested that it was the taste of dying Cpni rather than saturation levels.
For me, though, the taste is the same as the direct taste of the pills when they are in your mouth.
Spicy food can work for me in the short run (minutes to hours), but my hope was to semi-permanently "scorch out" my taste physiology, or induce tolerance. I don't really know if you can do that or not. But eaters of hot spice grow increasingly tolerant of spice, and I've also heard that smoking can dull the sense of taste. So I figured I'd just try. Anyway, I chewed up about as painful an amount of peppers as I could, til I was about ready to whimper and bang my head against the wall. Didn't work.
Good grief, Eric, I
Jim,Your pioneering spirit
Jim,
Your pioneering spirit serves you and many of us well. Hang in there!
BTW, I'm finding the effects of Vit D3 to still be cumulative, and I'm wondering if this might be part of what you're noticing. I'm now 5+ months on 4000iu on Vit D3 + CAPs, and I'm finding that even between pulses now (I'm actually due for one now but have company out and don't want to subject them to me on flagyli) I'm now getting major die off symptoms - aches, pains, fatigue, more fatigue, etc. My skin is a little more reactive and burning, but luckily I'm not having any major problems with rosaceai. But many of these reactions remind me of the reactions I was getting in pulses @ 6-8 months into treatment, and they seem to be permanent again now. Not pretty really...
I'm thinking this next flagyl pulse is going to be quite a doozy. So I'm trying to mentally prepare myself for it. Something wicked this way comes...
On Combined Antibiotic Protocol for Cpni in Rosaceai since 01/06
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On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIRi Sauna since 08/07
Red- Yeah, that might be
Red- Yeah, that might be part of it too. Been doing 2000-4000mg D3 per day, and upping the infra-red light "sauna" so this may be piling up the kill rate. Been a day and a half off of flagyli and woke up this morning major fogged out, loggy, burning eyes, etc. Not been like this for quite a while, so it is a bit like revisiting earlier times when pulses really flattened me. Payback for the impatient I guess. I know you know what I mean! The "more is better" principle. How American. A vit C flush helped some, we'll see how the day goes.
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyl daily (Continuous protocol)
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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
After 6 weeks of continuous
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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.
Have any of you with the
Have any of you with the nasty taste in your mouths tried vanilla?
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAPi since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Thanks for 'splainin' this
Thanks for 'splainin' this to me, Jim. It makes sense.
Diana
In reply to Eric's comment
In reply to Eric's comment "Spicy food can work for me in the short run".
I think that kind of (<reckless>) consumption of spicy food would send me to bed for three days. Sour and salty food, works best for me. I have tried ginger but that did not make much difference. I have a constant supply of chewing gum and mints to hand as well. Michele: Wheldon CAP1st May 2006 IBSi, sinusitis, alopeciai, asthmai, peripheral neuropathy. 26th March 2007 continuous Flagyli at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMSi Cap Started 16 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
The other alternative is to
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I've been trying to put
I've been trying to put down my tentative thoughts on this important subject.
Everyone's reactions seem different, and may tell us a great deal about the contracts / treaties which we have made with our microbial tenants.
A big reaction to doxycycline / azithromycin likely means that a large population of bacteria were in the active, replicating, fast-metabolizing mode; such persons are often in a frankly toxic state before they started. Myriads of organisms are suddenly prevented from actively keeping their distance from the death-dealing lysosomes, the chambers where proteins are broken down, and die.
Few reactions to doxyxyxline / azithromycin may mean that most of the organisms are in the persistent state already.
Some people get big reactions to metronidazolei which carry on long after the agent is stopped; this happened in my case. During the second pulse of metronidazole I had very unpleasant bacteriolytic reactions which continued for a few weeks after it was stopped. Reactions to further pulses were negligible. One might infer from this that the organism had, in dying, been presented to an immunei system from which the organisms had been purged. Game over.
Some persons get continued reactions to metronidazole for months if not years. These may have a relatively anergic immune system which is compromised by bacterial infection. It is these persons who may benefit from an elongation of metronidazole schedules, along the lines discussed by Chuck Strattoni and Jim K.
Some lucky persons never get reactions; for them treatment is as peaceful as a spectator's view of a bowling-green.
This is very speculative, based on observations, but it does show that treatment is not a 'one size fits all' thing: therapy must be carefully tailored to be effective on one hand and not to discourage on the other. Any kind of schedule of treatment is only a possible precis.
D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment. Normotensive.]
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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]
David- These are very
David- These are very important inferences. They help us to sort out, even if tentatively, the host-organism interaction that is so much a part of the infectious cycle and is lost in a blanket treatment approach, as well as the possible telltales for understanding our differing reactions to treatment. Rather than ascribe our reactions to "the flagyli" or to "the antibioticsi" it makes more sense to ask how they characterize the infectious state and the host condition. Bravo. I've been looking for this kind of parsing for a while, just didn't have the medical mind to see it.
As we are re-writing the treatment section, I'd like to incorporate these observations, labeled as speculative but reasoned from a medical source, credited also, as they help make sense out of much. You've known how I've long hated the misuse of the term "herx" and used the more general term "die-off" because the former term implies a singular response when in fact there are a number of different ones to sort out: endotoxini (more appropriately called a herx), secondary cytokinei/inflammationi, porphyriai, apoptosisi and immunei clean up, etc.). Broad brush terms tell us nothing about our condition nor about appropriate steps to counter reactions. Your post has added some very useful distinctions.
It's interesting that we have enough anecdotal data available on site and from treatment for a mind like yours to begin to speculate on some possible patterns emerging.
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyl daily (Continuous protocol)
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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
I LOVE how neatly and
I LOVE how neatly and succinctly this is written! It makes event the most addled mind able to understand. And I find it very meaningful, cutting right to the chase. Thank you, DW
Diana
Thanks, Diana and Jim!Yes,
Thanks, Diana and Jim!
Yes, Jim, I'm sure there are many reactions other than the 'Herxheimer'. I think this chronic infection throws so many systems out of kilter that, even after the organisms have gone, these same systems 'hunt' to find their ideal. The organisms have caused many types of cell proliferation which are seemingly addressed for months and years afterwards. (I think there may even be bone restructuring.)
D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. Now on intermittent treatment. Now normotensive.]
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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]
Wow, DW...this sounds very
Wow, DW...this sounds very much like what I went thru for a full year after I finished the protocol in early 2004...I knew the infection was gone, but intuitively, I could feel that I needed to bring my body back to proper working order. I felt I was at about 90-95% of what I could be after finishing the protocol. My immunei system seemed very strong for the first time in many years, energy was good, but strength and endurance wasn't what it should be...this alone, could be attributed to not using the muscles hard for so many years. So, I began to "fine tune" my hormones, was able to finally bring full strength back to my adrenals (with 4 months of 5mg cortef daily and conitnuing my vites and supps) after having attempted to do that for over 35 years of doing all I knew to strengthen adrenals; I had gone thru menopause at age 53, during the protocol and yet, last Dec. was pronounced by a specialist in gynecology that, not only am I NOT in menopause anymore, but my ovaries are viable and my reproductive organs are like those of a 35 year old woman, the monthly bleeding I hadn't had in years turned out to be a period (yikes! the first regular ones I have ever had!), what doctors suspected was a VERY abnormal ultrasound for a post-meno woman turned out to be the picture of a very healthy younger woman, when I was sent to a gynecological oncologist for assessment.
My skin and complexion look better than I can ever remember them looking...my skin is firm again, my color is good, my hair is getting full again, my b/p runs around 120/70, my [cardio]c-reactive protein and cardio homocysteinei levels are both in the lowest risk catagory. My liver checks out as very healthy and normal, my mental state is clear, focused and optimistic, and now nearing age 58, I feel as though I am finally experiencing the robustness of health which I didn't have in my twenties, thirties or forties.
Diana
Jim, this is your blog and
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CAPi 2/14/06 for Cpni-CFSi/FM/CD
DW, I find this comment
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CAPi since 11/06 for Cpni, Lyme, Bartonella, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.
I quote "David, as always,
I quote "David, as always, you are the voice of perceptive inquiry. Woe to us without your generosity of spirit and knowledge." end qoute
Oh my, yes indeed so well put. Brilliant reasoning DW, why did we not all see that- it seems so obvious now! My own experience was one of frustratingly mild reactions to the azith/dox. I was half thinking it was "poor me, no CPn" but when I took NACi... MY GOD! I am not kidding you, it made me very ill, so much so that I believed it must not be NAC flu but rather an actual but super bad flu (nope wrong). I have always wondered how it was that I had so little reaction to the abxi (when some have a terrible time adjusting and have to titrate them in slowly) when it was such a non event for me and at the same time I was so profoundly ill (obviously full of EB'si) with NAC that I was the one titrating carefully and taking my time getting up to dose on that drug. Now it comes clear.
Wow, thank you so much for that. BTW I have been moving towards continuous for some weeks now. Get at those cryptic bugs!
marie
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, all supplementsi.
"Color out side the lines!"
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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Currently on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, back to pulses of flagyli winter '08 all supplementsi. "Color out side the lines
I want to say thanks to
I want to say thanks to everyone for sharing their experience & comments. This helps in so many ways & in particular for the newbies like myself who are just crash coursing juniors, trying to get our minds around the plethora of information we need for protocol preparation & staying the course.
I have learned a tonne so far.
You all are great.
My prayers for everyone going through this tiny bit of hell.
With Christ in Faith
Ruth
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#14 1000 mg X 5 days 9-19-08Question regarding NACi?
Question regarding NACi? Since both amoxicillini and NAC do esentially the same thing as far as killing EBi's..has anyone noted a different reaction to NAC vs amoxicilln? I think my son has one...he seems to have no adverse symptoms when he takes amoxicillin or even something similar, like a high dose of Augmentin three times a day...but NAC is difficult for him, even at 600mgs. Could this be? or could I just be seeing some other die-off reaction from one of the other things taken the same day, like doxyi or azith?
There are times when he tolerates zithromax and/or doxy very well...other times, for days on end, he has terrible die-off. I kind of figured that this is like what I experienced...there were times when I was not at all fazed by the drugs, and other times where I would get tired or feverish or wracked with pain. I figured that this happened because higher numbers of certain stages of the cpni were being killed off at certain times when it was particulary bad. But amoxicillin and NAC both attack the same thing....so why would one give anyone a different reaction than the other?
The other thing that comes to mind is....does NAC work the same way as amox ONLY for cPn? If so, and if a person has other co-infectionsi, such as mycoplasms along with the Cpn which they are addressing, then maybe this would be a reason that amox and NAC are experienced differently. But one would think that, since NAC is friendlier to the liver plus helps feed the cells, it would cause less havoc when one takes it....
In any event...this is what i am presently pondering about : ) any ideas? anyone else with the same reaction?
Diana
Hey Jim, watch how much you
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98% well and going for 100! CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi Also EBVi and HHV6 My grateful thanks to all the CAP docs!!!