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Cpnhelp.orgEmerging information about Chlamydia pneumoniae in disease & its treatment. Passing help forward! |
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Brenda's ProgressSubmitted by katman on Wed, 2008-01-30 16:35. This is for Brenda who finally, after two years of Rifampin and flagyli, got her Doxycycline. She has been on it only for two weeks and today called to say: My grandchildren told me that I am walking better. I can lie on my back and draw my legs up and push them out again without cramps. I can turn over. Today I carried laundry out and hung it on the line. The feeling that I am dirty and have to get in the shower every ten minutes because my legs have movement under the skin, is going away (this was undoubtedly muscle spasms). I have lots more energy. AND .... her grandchildren came home with honor roll report cards.
This report makes me dance for joy after the chance meeting with Brenda two years ago and finding that we share a debilitating disease, and now are sharing treatment. This is a very nice person who doesn't have a computer so I am posting her progress in the hope that one day she will join us.
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Rica PPMSii EDSSii 6.7 at beginning - now 2. Began CAPii 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 LDNii Rifampin 8/08 again NC USA »
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Evangelists! We've all
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
RIca, please be sure to
RIca, please be sure to tell her that we are sending her lots of love,and happiness..
Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBVi, CMV. on NACi 3600mg, doxyi 100-2xday, azith 250 m/w/f/sun,
estriol, progesterone, synthroid, and pulsing w/flagyli.___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni, myco, EBVi, CMV. Capi began in 6/07. NACi 2400mg, doxyi 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli pulses
Rica, more good news: its
Rica, more good news: its coming fast now. Please give Brenda my best wishes also.........Sarah
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YAY BRENDA!!! Rica, it is
YAY BRENDA!!!
Rica, it is really nice of you to pass on her news.
Goooo heal!!
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 daysSarah- It seems to be
Sarah- It seems to be about two years into things that the good news rolls out. Maybe that's a useful rule of thumb for MS? I too can feel the momentum of this thing!
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 don't really think
Jim, I don't really think you can make a rule of thumb for MSi. Some relapsing remitting people can throw it off way before two years, other people who have had it forever, can do nothing but stop progression. Then there are the people in the middle, like me. I'm not by any means typical of this, though, because I think my biggest good news came by the end of the first year. After that it kept coming but at a more stately pace. One thing is for certain, though, there won't be any good news unless you work at it: it won't just drop out of the sky, like the hail falling here at the moment........Sarah
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Sarah- You are, of course,
Sarah- You are, of course, absolutely right. That's the thing here, there is no "standard" response. I was going by a vague impressionistic sense, having read all these posts so many years, that there are perhaps some kind of clusters of improvements at different time periods, 2 years being one cluster ie my vague sense that people report something significant around this time. What we have, on all fronts, are generalizations which are often not true in particular people: CFSi reactions are worse than MSi (witness Artile and Ella for contrast, and David's report of a CFS patient with no reactions to treatment other than improvement-- lucky dog), pulse 8-14 as being a turning point for people (another generalization which probably isn't true), etc. Like everyone, I keep trying to make simple sense out of something too complex for such. Thank goodness we have a place where we can compare how people are responding and knock down our presumptions before they become fixed!
CAPi for Cpni 11/04. Dx: 25yrs CFS & 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, and in reality we are
Jim, and in reality we are dealing with perhaps more than one stealth bacteria and that can add to the mix of responses. And the best association is that many of these stealth bacterial pathogens are receptive to the same medications. Not all but many. And it could explain the individual differences. For example MSi from CPni with microplasma Pneumoniae on the side could make that individual as ill as those of us with the CFSi diagnosis. Or some MSers have more bacterial loadi in various other tissues of the body.
And then we can say well what difference does that make if many of these stealth bacterial pathogens are inhibiited and killed ultimately by the same brilliant combination antibiotic protocol. Which goes back to the emperial treatment without spending literally thousands of dollars on testing, dollars that could pay for your treatment for years and years.
Some generalizations are helpful for new foggled folk in my opinion.
Louise.
CFS/ME.CPn positive.Bb positive.
6/24/07WheldonCAPstartedDoxy&NACi. 11/3/07Roxi150mgBID added.
01/30/08 Pulse #4Pulse Tinidazole 500mg BID
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Louise CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
Sarah, do you have any
Sarah, do you have any statistics for ppmsi?
PPMS-misdiagnosed 2001-diagnosed 2006. 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. 4 pulses. Rockville,Md. Loo
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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.
No statistics Nancy, but
No statistics Nancy, but some docs are of the opinion that PPMSi and SPMSi are he same thing, but no damage appeared until the disease became progressive, which might be true because PPMS people tend to develop the disease at an older age than the norm.
Louise, I don't really think that generalisations are a good idea, because new folk can get completely the wrong idea, for instance, thinking that a CPni cure is universally heavy going: nothing to do with the presentation here.
What I am pleased about, though, is that Brenda is a lady without even a computer, so can't follow any forums yet is determined to get as better as she can regardless, so I wish her well.........Sarah
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My first mention of Brenda
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. flagyl 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
Sarah, aren't there drugs
Sarah, aren't there drugs available for spmsi? They have been proven ineffective for ppmsi. Whenever i call about a drug trial I am told that only people with rrmsi and spms qualify -- not ppms. Which doesn't mean that they are right, I know, but they obviously make a distinction in prescribing and in their study pools..
PPMS-misdiagnosed 2001-diagnosed 2006. 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. 4 pulses. Rockville,Md. Loo
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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.
Just a laywoman's thought,
Just a laywoman's thought, if we think of MS along the Cpni model rather than the autoimmune model don't MS categories become irrelevant? The disease is the same its just that the Cpn infection sites, progression and severity differ with each person.
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 6.5 Wheldon CAP 16th March 2006
I think Michèle has a
I think Michèle has a good point here: several years ago, campath was tried on people with SPMSi at Addenbroke's in Cambridge and they at first appeared to be improving but then got more rapidly worse than they should have done untreated, as presumably the pathogen raged unchecked. In the UK, nothing is considered to work for any progressive MS, all the damage adjudged to be caused by myelini breakdown rather than inflammationi..............Sarah
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Sarah, Like the effective
Sarah,
Like the effective chatelaine you are, you've hit the nail on the head and driven it in several inches.
The fact that fierce immunosuppression with Campath made people with SPMSi deteriorate faster renders an autoimmune hypothesis absurd and points to an infection now untrammelled. What else could explain this response?
The red lights are flashing and the klaxons are sounding. . . and William of Occam is ignored once again.
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 110/75]
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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]
William of Occam - well of
William of Occam - well of course I had to look that up...Occam's Razor...All things being equal, the simplest solution is the best.
Or in geekspeak - KISS.
New Forest, UK. Progressive MSi dx 12/06 LDNi 3/07 CAPi 6/07: Wheldon
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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #17...I can because I think I can.
This chatelaine used to
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 55 pulses LDNi Rifampin 8/08 again NC USA