I also am reluctant to have my story taken as typical. That’s the difficulty with anecdotal reports, they tend to be seen as paradigms for what to expect, like Sarah’s recovery from MS. The reality is that, at this time we don’t really know what is typical. No one looking for hope and “the answer” wants to hear that. But it’s the truth. This is a shot in the dark, grow up.
I have also been concerned that my article on CFS and Cpn, while accurate as I could get it, leaves the impression that all CFS/ME is caused by Cpn, that this is the sole factor, and that a CAP will do the whole trick. Clearly, this is not the case!
We simply do not know what conditions will improve, remit, and what will not. As in MS, some damage in CFS/ME may be permanent, some things may not correct on the CAP or not correct fully. We are the test group!
I’ve been thinking a lot about the factors that play a role. Genesi, length of infection, endocrine disturbance, co-infectionsi and many others. I’ll save this discussion for an editorial.
Bear all this in mind when I discuss my latest travail on the CAP. You will probably be asking the same thing I have been, “If the CAP is so helpful, why is this guy going through such a difficult period 3 years into treatment?” I have a few answers to this one, and we have a good report from Raven who hit similar difficulties earlier this year and has overcome them. But all the answers are not in. I am committed here at www.cpnhelp.org to being truthful, honest, and letting people make up their own minds. This route is not pretty, and certainly it is not certain. You get informed and make your choices, and we learn from each other as we go. So for learning from each other, here goes.
I’ll start with the present pulse, a well deserved rant, and then a recap (reCAP??) so we can get to the really important questions. Your job, should you choose to accept it, is to tell me what @#$!*&#! number pulse this is, i.e. how do I count after continuous periods of treatment and returning to pulsed method?
11/28- Start pulse (number what??) of 500 mg tinii x 2. Lot’s of aches, pain, suppressed appetite and nausea, slow clearing fog every morning and after dosage, irritability. Helped but not cleared by cholestyramine.
This is day 4 of this pulse.
Rant: What the @#$!!(*&&#!? After all this treatment time, plus getting to the point where I had almost not reaction to pulses, why is this pulse hitting so hard? I’m dearly pissed off, miffed, whining. It’s soooo undeserved! Look how hard I’ve worked, blah, blah, blah.
Okay, rant done. But it’s a serious question.
But.... some improvements thanks to Dr. Powell’s continuous research. I added iodine recently (see below). Once I found a form of it that I could absorb well and tolerate, it made a big difference to my energy and cognitive focus. Finally! I’d been expecting the CAP to clear the rest of this, but it was not. There is more going on here than just need for antibiotics. This bacterium (and it’s hench-organisms) screws up a lot of body systems and chemical balances. These don’t always right themselves by killing the bug. I have a lot of thoughts about this I hope to get into an editorial, eventually. But I’ll keep this to a personal report rather than editorializing. So, more data for the curious.
A brief recap, or reCAP:
- Two years into protocol, had 60-70% improvement of CFS/FMSi symptoms. 2006-12-31 did Pulse 23. Protocol at that time-- doxyi, azith, tini pulses, 150 mg per day INHi. I had felt on a plateau at this point: little reaction now to pulses, not improving in level of fatigue, brain fog. From a previous post:
- 2/13/07 I added 500 mg Tini/day. Reactions stronger than expected from previous pulsing, but manageable and diminishing over time.
- 2/19/07 I added a second dose for 1000 mg Tini/day. Reactions stronger than expected from previous pulsing.
- 3/4 & 3/21/07 I was experiencing "bad Tini days" i.e. stronger than expected reactions and not diminishing. I guessed from Red's reports that the D Dr. Powell had added was making the pulses stronger, so cut it back to 1000 units from 3000 units and dropped back to 500 mg Tini/day until reactions eased.
- 4/1/07 Back to 1000 mg Tini/day. Tolerated better.
- 4/18/07 In a fit of optimism (see my signature) I switched to 1000 mg flagyl/day to see if the effects were any different from the tini. I could now tolerate flagyl. I'd always used tini because for the first two years flagyl would make me violently nauseous, but now it gave me no worse nausea than the tini. About this time I had also added near-infrared sauna, about 20-minutes twice a day (I know, I know, but I didn't see that the D, flagyl and sauna were potentiating each other then, only know that now). Over the next two weeks I was increasingly brain fogged, depressed, flattened affect, lethargic.
- 5/3/07 I had become completely flattened. Emotionally flat, depressed, and seeing that I could become incapacitated by it, so I stopped the flagyl and Vitamin. D completely. Took two weeks for the depression and flatness to clear.
- Dr. Powell noted that the that I was doing amount of sauna alone could produce considerable die-off, and he recommended using lower Vitamin Di as it clearly potentates both sauna and flagyl/tini, and with many patients he was taking them off the abxi as the combo of D and sauna was producing more than enough results. In other words, his polite way of saying that I had unwittingly overdone it! We agreed that I would drop back to 1000-mg D, do less sauna, and take a more gradual approach to the continuous.. Discontinued Valtrex as did not seem to be doing anything useful.
- 5/14/07 Started again at 500 mg Tini, only 1000-mg D. Sauna for 10-15 minutes only a couple times a week.
- 6/12/07 Added second tini for 1000-mg/day. Main symptom is increased nausea and low appetite, some increased aches.
- 7/24/2007 - Stopped continuous tini for vacation.
- At end of vacation, increased INH to 300 mg in morning since I wasn’t doing the tini at this point. Surprising increase in joint aching and die-off fatigue for first week and a half.
- 8/25/2007- Same flattening of affect, encroaching depression, increasing cognitive difficulty as with both continuous tini and flagyl. Is this the meds? Impact of killing more brain Cpn? What?
- 9/1- Stopped INH, just with doxy, azith, occasional FIR sauna.
Now, what I haven’t mentioned (funny omission, that) is that during this period I had a huge amount of life-stress. Sick child, family discord, financial strains, just a few little things. So, you get the picture when you see that I was pushing for increased Cpn treatment while life stresses were putting a major challenge on my system. I was a bit oblivious to this because, in my improvement on the CAP to date, I had become so much more stress tolerant than I had been in years. This made it harder to recognize that the current stress was truly affecting my health as I attributed all of the difficulties to my CAP response. Or maybe it was just denial. Go figure.
However... traveling overseas I noticed that I had little to no travel impact (inflammationi, etc), just normal jet lag adjustment. Even as of May 2007 I still had a day or so of post travel inflammation. So, despite the stress and protocol reactions, some continued improvement was indeed occurring.
In the ensuing months I was so focused on coping with family issues and business demands, that I didn’t do anything by doxy and azith.
- 10/1 Added back in 150 mg INH as I’ve not been doing any pulses. 5 days of some mild reactions, but otherwise handling okay. Notice that my stress-tolerance is not great, little sense of margin, and still struggling with cognitive focus and energy.
- 10/20- Do a “high dose pulse” of 2 grams Tini evening and morning.
- Repeat this the next week. These seem manageable: immediate flare of inflammation and joint aches, but subsides.
- 11/1 Consult with Dr. Powell- He adds Iodoral, Cytotec, hydroxychloroquine (Plaquenil). Iodoral irritates my urinary system horribly (probably the potassium salts). I find a form called Magnascent iodine, which has a significant impact on improving my cognitive focus and energy! So, this stubborn symptom seems due to related secondary causes rather than Cpn itself. Yeah!
- 11/7- Notice that I am having difficult time kicking stomach virus, keeps coming back on me. Decide to go back on Valtrex 500 mg x 2. Within a couple of days, feel better generally and stomach virus starts to fade. Obviously, could just be the virus faded out on it’s own, but I feel more resilient and stronger, so decide to stay on it.
Okay. Lessons learned?
- Stress does make a difference to my CAP response. Duh, but good to recall.
- In CFS/ME/FMS, a lot is screwed up! Endocrine, inflammatory cascades, etc.
- Killing Cpn does not, for example, meet an undetected depleted nutritional imbalance (iodine for example, or Vitamin D). Finding out what’s missing can be happenstance.
- Co-infections make a difference. A lot of things improved for me, immunei system wise, on the CAP. But add in the stress factor and my greatly improved ability to fight off colds and flu goes down, excuse the phrase, the toilet! Then I needed the help of an antiviral.
- 25 years of illness means a long, long CAP treatment. Dr. Stratton told me this in the first conversation I had with him. I didn’t want to hear it, really, at the time. Or rather, I reported it but didn’t want to apply it to me. Three years in, I get it now, I get it. Damn!
More to conclude here, but enough for now. I’ll try to bring my signature up to date next.
Reporting in, live (mostly) from Ohio....
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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
oops
oops
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63 year old woman feels like 80! CFSi since 1998. Severe fatigue and awful reverse sleep main symptoms. No Fibro. Tested positive for CPN 3/07. Severe reaction to azithro (begun slowly in 5/07) - stopped.
Jim, Thanks once again for
Jim,
Thanks once again for being such a help. You are the Mark Twain of the CAPi.
There is so much here that I will need to go back and re-read.
Thanks for addressing those of us with CFSi as well as dealing with the reality that this "thing" is very complicated and very individual. We all want to have a no fail, step by step solution, but at this time, it clearly isn't possible.
I'm sorry you are having bumps in the road and yes, it is hard to remember all that we need to remember (aka, stress depletes,etc.) all the time. I am so happy that you have posted this. Brings into the focus things that have been somewhat articulated but scattered.
You made my day even though it is a reality check.
Thanks,
denise
63 year old woman feels like 80! CFS since 1998. Severe fatigue. Tested positive for CPN 3/07. Severe reaction to azithro (begun slowly in 5/07) - stopped. Working with nutrition, vitaminsi before starting more abxi.
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63 year old woman feels like 80! CFSi since 1998. Severe fatigue and awful reverse sleep main symptoms. No Fibro. Tested positive for CPN 3/07. Severe reaction to azithro (begun slowly in 5/07) - stopped.
Thank you Jim for your
Thank you Jim for your candidness (if that is a word), and blunt honesty. I think we all need realistic expectations and not warm air blown up our arse. Back when I was diagnosed with CPNi in 6/07, my doctor told me that he thought that I would get back to 100%. I believed this for a long time. It has just been in the past month, that I have come to the realization that this may or may not happen. I have read some of your recent posts about co-infectionsi affecting our recovery, etc. I have taken your words to heart. When I see my doc next, I'm requesting testing for myco (which my sister has), EBVi, CMV. Jim, I really like for you to expand on this comment, 'I’ve been thinking a lot about the factors that play a role. Genesii, length of infection, endocrine disturbance, co-infectionsi and many others. I’ll save this discussion for an editorial. '.... As you know from my signature line, i have the endocrine, hormone and metabolic disturbances, and am very interested on your take on this...
Mphs, TN. CFSi, hypoT, weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. 6/26/07- CPN Titer 1:256 (normal 1:16); 6/27/07- NACi; 7/2/07- doxyi 100, 2xday; 7/19/07-9/7/07- Biaxin. 9/8/07-azith 250 mg m/w/f. 10/18/07-1st flagyli pulse
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Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<i am looking forward to
i am looking forward to reading all this thread - um, just too tired right now, (typically annoying at times).
M.E./CFSi 20 years. Wheldon Protocol - Started NACi and supplementsi Sept 2007, Doxyi daily 100mcg October 2007, Azithromycin Nov 2007.
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M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
Blackfoot- so true, so
Blackfoot- so true, so true!
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tinii pulses.
A motto, not an aspiration: "Anything worth doing is worth overdoing."
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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 wrote a post for here & my
I wrote a post for here & my hard drive is going. IN the middle of it i received the blue screen of death, thank you microsoft & Bill Gates!
Anyway, our illness has soo many nuances so there is not an easy button we can push here. The road, the "long & windy road" (name that tune) bumpy & hilly. Expect the unexpected is my ?what do you call it (brain fog) flagylated at the moment. Mantra!!! it is my mantra.
I am hopeful to get back to a point where I have very little deficits even though I have been breaking down to my worst state 2 yrs ago. I really think that I was spared a worse fall as I have been a strong advocate of supplementsi for the past 25 years.
Jim, I am sorry to hear of your stress. I wondered how you were doing with all the balls in the air. It is not surprising that a few of them fell. Your body just telling you that is the limit for the time being.
You will get better yet even though you are a bit tattered at the moment. This illness definitely has a learning recovery curve! BEing a typical type A personality, I am constantly pull in the reigns when the old me says, "come on, do it!!!" I have learned that adrenaline was abused in my body & that life is now all about how much energy will that task take to complete; how many can I put together in a day.
I pray you have at least a 95% recovery. In the early new year I turn 51, I am hopeful in 2008 I will be getting back to the workforce. Perhaps it won't be in a high level exec position & only part time when I can do it without causing future damage to my body. That is my hope.
My prayers for you, your family for the best possible outcome in your treatment journey.
Peace & Good will toward Man
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 10-30-07 3rd pulse 2 X 250 mg 2day
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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#13 1240 mg X 3 days 8-7-08Whew, I felt the fatigue
Whew, I felt the fatigue just reading through your reCap!
Seriously, great lessons learned, Jim. And I'm glad to hear the Magnascent (or is that Magnificent) iodine seems to be working for you. Hopefully this will make the last stages of the CAP rocket-ride go more smoothly for you...
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
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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
Daily FIR sauna, Dan? Can't
Daily FIRi sauna, Dan? Can't be. Must be an error in your signature. You must say more about that. Alliteration aside, it's a revolution for a Rosacean.
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
Too funny, Jim. No, it's
Too funny, Jim. No, it's no error.
Trying not to Shanghai your thread too much, I've actually found the FIRi sauna to now be very helpful for porphyriai symptoms as long as I'm careful to avoid the point where I reach a rapid pulse rate. Remember, when I first started CAPi I could get a rapid pulse rate and heat exhaustion-like symptoms from walking around in heat above 75 degrees F. I was much, much better before starting the sauna so I don't really know how other rosaceans (or other people with real thermoregulatory issues) might react to it.
Generally I do 30 minutes per day on high - @ 150F in my unit - but turn it back to medium if it's kind of hot in the house (I was doing medium level the week of those awful Santa Anas, before I was evacuated from my house that is).
And the FIR sauna actually seems to be keeping the old porphyria symptoms at bay for me. I had to go a week without the sauna a few weeks back and I noticed a huge increase in porphyria symptoms after several days - for me, fatigue, skin burning, skin drying (hangnails, chapped lips and flaking skin, with more rashes), hair falling out, and low grade headaches, general crankiness. You all know the drill. One sauna session though and all these symptoms started to recede. A couple of days of sauna and I was back to my now normal.
If I stay in the sauna for too long (or at too high of heat), I get the rapid pulse thing, and then notice that the whole porphyria thing increases as well. It's a really fine line for me. I also have to eat carbs until the cows come home, drink plenty of water, and avoid beef. I can get away with ham, but beef of all things gives me real troubles. I can also get away with a couple of small glasses of wine every now and then, but I have to up my water intake and be very careful of my diet for a day or so after to avoid crossing that magic porphyrin line.
I just upped my Vit D again and I've noticed that fine line has narrowed a bit for me too again. Still, I'm for the most part doing really well thanks hugely to the FIR Sauna. Who'd have thunk it?
BTW, I've blogged a bit about my use of the FIR sauna on one of the rosaceai sites here in response to one other rosacean who is using it for her eczema:
Infared Sauna
On Combined Antibiotic Protocol for Cpni in Rosacea 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIR Sauna since 08/07
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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
Thanks Jim, for your story,
Thanks Jim, for your story, I always learn something new when I read your contributions.
Iodine, well considering the number of people here who have had trouble with their thyroid this is no surprise, why did we not think of it sooner? Probably one of those balls we were trying to juggle....
Michele (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
Ruth- thanks for your
Ruth- thanks for your heartfelt response. I always feel your support for myself and others on site.
Thanks also Denise and Sharon. I try to keep some standards here for truth and accuracy!
Red- your careful regulation of the FIRi sauna seems to be the trick. I've done it on the basis of time, trying to do 30 minutes, and I think this is the wrong approach as sometimes this tips me over the edge and sometimes not. I'll try it again using heart rate as the indicator. Thanks.
Iodine- Dr. Powell got onto the iodine not from the thyroid angle, but from some research showing that cells under infection dump minerals, particularly iodine, at an astounding rate. Digging further, he found the work by Brown on pernicious iodine depletion and began to experiment. One of the things he found is that iodine can cut into die-off symptoms significantly. I've found this to be true on this pulse if I use it in time. I can't use the iodine at night as it will stimulate and keep me up, but now that I'm past the first three days of the big whack and my reactions are milder, 6 drops of iodine cuts my die-off symptoms by 60-70%. If others are using it, let me know if they have similar experience. This book http://www.drbrownstein.com/singleproduct.asp?id=787 is the source. Also, some good info on this site http://www.helpmythyroid.com/iodine.htm
Okay, no takers on the "Number this Pulse" contest?
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
Jim - I agree with others -
Jim -
I agree with others - always learn a lot from your posts! You are very generous in sharing your experiences !
Am also sorry for the stress you have been through personally and hope that eases for you soon. I think modern day stress is a very important warning signal to our bodies that we must carefully listen to. Maybe it's saying to put down some balls, let go of trying to fix some problems, take a rest for a while and just be. I always find when I do that that things still seem to go on without me and many problems seem to find their own resolution.
Congratulations on how much success you have had in improving your health and tremendous admiration for you on how hard and smart you have worked to gain it!
Daisy-Caregiver- Balo's Concentric Sclerosis. CAPi 5/10/07.
Doxyi 200 mg, Minoi 100 BID 9-1,Azi 375QDRoxyi 300 BID 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3,Novantrone, Rescue Prednisone___________________________________________________________
Daisy - Husband on CAPi 5/07. Roxithromycin, Rifampin, Bactrim DS, Tindamax 6-23,
Tetra 7-3,azith, doxyi, minoi, diflucan, mepron, prednisone, NovantroneWell done Jim - great post!
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.
I should add in that the
I should add in that the past two days have been relatively mild in reactions on the pulse. No nausea, just a couple hours of irritability during the main hit of a dosage. The iodine continues to support energy and cognitive clarity, just left with aches. I'm guessing that in the long break from bacteriocidal (tinii) I built up a bunch of cryptic bugs that gave me a big up-front whack. Not so bad as we go through it. But we'll see tomorrow, who knows?
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tini 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
Continued good luck,
Continued good luck, Jim! Let's hope the Iodine continues to work its "magic"...
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
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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
x OOPS.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.
Jim, this has been the
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 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 52 pulses LDNi NC USA
You are correct, Louise. A
You are correct, Louise. A mistatement on my part. I meant "bacteriocidal." Will change in my post, thanks.
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
Hi Jim, Thanks for your
Hi Jim,
Thanks for your honest and humorous post. I admire your perisitance and ability to look at options when in the middle of fog and debilitating porphyriai, not to mention (or discredit) stress. I do not find myself quite as flexible. The iodine sounds very interesting. I think I do not pay attention to the various methods of trying to minimize my reactions to treatment--thinking this is just what you have to go through with the treatment. I will take some time to look more carefully at those options, just in case I really can feel human during "those times". I have questions about the pulses. I am due for pulse # 6 this month which will be Flagyli 800mg day1 and 400 mg days 2-5. I have been treating the pulses as a monthly occurance. Is this how everyone does it or do you just begin another pulse when you've survived the last one? Also more about the the secondary reaction would help me.
Stress matters?!? OMG, I woulda' never believed it. I'm so glad I'm not the only one.
I think maybe you are on pulse 42.
Dx:CFSi/ME;CPni;Post Polio: On CAPi since 3/05. Azith 500mg MWF, Doxyi 200mg bid, NACi 1200mg bid, Calcium Pyruvate 488mg/2.1GM bid, flagyl pulses (gobs of activated charcoal).
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DD
Dx:CFSi/ME;CPni;Post Polio: On CAPi since 3/05. Azith 500mg MWF, Doxyi 200mg bid, NACi 1200 mg bid, Calcium Pyruvate 488mg/2.1GM bid, flagyli pulses, (gobs of activated charcoal), B6, B12, Magnesium, Magnascent, Cholestyramine.
DD - According to 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
DD- Thanks for your
DD- Thanks for your comments and support.
What Mac said. You pace it as your body needs, the average is once per month for most folks eventually.
I'll take 42 as a pulse number. At least it's lower than my age! Okay, round it off to 40-- So I'm on pulse 40.
I'd recommend the measures for improving reactions not just during a pulse, but regularly, especially in the first year or so. Porphyrins build up in all sorts of tissues and it takes regular use of absorbants to pull them out over time. True, during a pulse you get an extra load. But if anxiety, depression, pain, nausea, GI disturbance, etc are regular symptoms for you, you may benefit from a more constant antiporphyrin regimen.
One of our members has had very good results from regular 3 tablets per day use of Welchol. It's pricier than cholestyramine (the other rx absorbant) but if your insurance covers it and your doctor will prescribe it, it's eaiser to take and more effective apparently. See if over time some of your symptoms improve with the add in.
What it won't help with is the inflammationi during the pulse. That has been my biggest hit this pulse, although much easier after day three.
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
Thanks MacKintosh and Jim
Thanks MacKintosh and Jim for that clarification. I thought I understood the pulses, but then I thought again----and again----always a mistake. I will begin adding some of the suggested measures for improving reactions. Will let you know.
Dx:CFSii/ME;CPni;Post Polio: On CAPii since 3/05. Azith 500mg MWF, Doxyii 200mg bid, NACi 1200mg bid, Calcium Pyruvate 488mg/2.1GM bid, flagyli pulses (gobs of activated charcoal).
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DD
Dx:CFSi/ME;CPni;Post Polio: On CAPi since 3/05. Azith 500mg MWF, Doxyi 200mg bid, NACi 1200 mg bid, Calcium Pyruvate 488mg/2.1GM bid, flagyli pulses, (gobs of activated charcoal), B6, B12, Magnesium, Magnascent, Cholestyramine.
Love the reCAP Jim, so
Love the reCAP Jim, so pleased to hear that you've come through the stress and experimenting with treatment without losing your CAPacity for awful puns.
How to count the pulses...........what about starting to count again at a new level so the first pulse since the continuous run is labelled Level 2 Pulse 1, or we could call it 2:1, then 2:2, 2:3 etc.
This means all your earlier pulses were at Level 1 then if you try continuous again at some time and come back to pulsing you'd move to level 3.
Too complicated?
Thank you for the information about iodine, it's very interesting, I'm going to give it a try so have just ordered some and will report on how it goes.
Elinor ..... from England on CAP, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
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Elinor ..... from England on CAPi, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
Jim what a great update of
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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
Jim, Despite your capi
On Wheldon regime [Doxyi, Azith, and Flagyli] for rrmsi since October '05. Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; EDSSi was 6.5, now 5.5. United States.
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Began Wheldon Protocol for rrmsi October '05. Currently OFF all abxi since June 26, '08 due to severe porphyriai. Added LDN 4.5mg qhs October '07. All supplementsi.
Great report, Jim. It
Jim, Do you know what
Jim,
Do you know what brands of magsacent iodine are reputable and known to be of high quality?
I only see a few retailers online--none of them appear to be established brands.
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ME/CFSi 13 years. Started CAPi 12/20/07 w/ NAC 2400 and azithromycin. Plaquenil added 12/25/07
No, only what I use which
No, only what I use which appears fine. By the way, Dr. Brownstein's comment on this form is that it is not of sufficient dosage to supplement sufficiently. If you read his book, you'll see that it takes sufficient amounts of iodine to start to displace and clear the bromine which has blocked the iodine receptors, as well as other problems. I'm using the Magnascent only because I couldn't tolerate the formulation of the Iodoral yet, but hope to eventually.
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