Brenda's Progress

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.

Comments

This chatelaine used to

This chatelaine used to drive a #6 nail (looks a lot like a gutter spike!) into oak. She's mad as hell at the drivers of the trotters who can't see that this is a course for the steeplechase. It is obvious who has on the blinders.

 

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

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

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 hypertension">i (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]

D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

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. Wink

New Forest, UK. Progressive MSi dxi 12/06 LDNi 3/07 CAPi 6/07: Wheldon

speedbird

  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

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

My first mention of Brenda

My first mention of Brenda was Sept, '05 when she came for milk and I gave her my cane. Sometime around then she came under the care of a well-known MSi neurologist in Charlotte, NC, and was part of a study. She was put on Rifampin and flagyli and for two years she made the - for her all day - trip to see him and for me it became Rifampin, flagyl and..., and..., and.... Some months ago I voiced the opinion that she should get a second opinion and see my doctor. She did and he did not want to interfere, so ....no Doxyi. When her next appointment came she told him she was there to get Doxy and was prepared to wait there until she got it and that she wasn't going back to that fellow in Charlotte that she had seen her friend (me) getting better and wanted to get better too. That may be happening. I bet she is the only one with that protocol under her belt.

 

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

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

  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

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

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 BIDi<

 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
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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. Dxi: 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

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

  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

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

 Sarah- 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. Dxi: 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

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

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 - melatonin">i, 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

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

  Rica, more good news: its

 

Rica, more good news: its coming fast now.  Please give Brenda my best wishes also.........Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 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, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

Evangelists! We've all

Evangelists! We've all become evangelists! I wonder, would Brenda like to host the tv show? We can send all money raised to Vanderbilt's program and heal the world. (One person at a time, of course, as we've been doing since meeting Sarah and David.) What great news, Rica! Send her my best wishes!

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

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