My story

Hello! I have been blogging my progress as I have been on the Wheldon/VU protocol but the time has come for a patient story. I am now 6 months into treatment. If you would like to read my story of getting MSi please see my blogs.

I started treatment in September of '05. After months of reading about it and lining up my doctor (a chronic illness specialist who uses abxi regularly for "autoimmunity") I felt prepared to cope with the regimen as I was finally well convinced that the overall research on CPn made it a plausible candidate for the immune activation etc we see in MS. Though it is not proven, it seemed compelling, and my symptoms were at a point that I was out of traditional options I was willing to undertake. I was offered novantrone as the next logical step, but the cardiac difficulties that are possible with that drug left me unwilling to participate as my family history is bad for heart disease.

I felt stuck with only the copaxone I'd been taking since it's release which I've never felt did much for me, though my doctor is convinced it has kept me doing "so well".

Let me tell you what is meant by "so well".  I have SPMSi after 15 years of MS ( absolutely on schedule for the natural course of the disease in spite of the fact I was "benign" before copaxone-I could still jog when I started it)  and do not necessarily agree that after 10 years of copaxone and $180,000 of money spent on it that SPMS at this point is me doing "so well". It seems to me the company is the one doing "so well" but in fact, it is true that I may have been worse if I had not taken it. It's frustrating that I cannot know the answser to that and makes it hard to argue with the logic that it "must have" helped. 

I had gone the LDNi route also with no improvement at all in my personal case though I did have a greater sense of well being on it. I am not taking it now, but am taking copaxone. Suspenders and belt approach as Jim says!  Since it is possible that there is a subset with this issue rather than it being the cause of all MS, by doing both I am covering my bets.  I do wish I had been on interferon though as it is somewhat anti chlamydial.

I did not react much to the doxyi which I took alone for one month at MD request. I then added azith and felt a little more tired, and I started to fall more often. This was a subtle worsening that crept up on me, not a sudden reaction that seemed related to the abxi. and this results in a sort of vagueness about how you are doing and what is related to what. For example in the case of falling, if it happened immediately after the antibiotics you'd see tha tas a reaction, but in my case the falls were not seemingly related to anything, they just started to happen as if I had gotten more MS symptoms.

After about a month I began to have more energy and found myself doing more and definitely feeling less irritable and "on my last nerve" than I had pre abx. I had some days wherein I accomplished a lot more than was normal for me, even one day after a full day electing to go look at the moon on the beach with my sweet husband and feeling happy to do so, not like was forcing myself against fatigue. This was an improvement that crept up on me. My massage therapist also started to say that my muscles felt very different, releasing as a normal person's do to the massage, not hanging on to spasm the whole time. This was objective as I've seen her weekly for a year or more. So that was a great piece of information.

I still have more energy than I did before but it feels "normal" to me now, not special and noticeable. This is one of the hard things is that things are not dramatic and sudden and you gradually accommodate to the gains and changes as you go thus not necessarily noticing them. It's good if you have some kind of objective way to tell if you are "better" like how far you can walk or something of that nature I finally took my first flagy after much angst over it early in Dec. One pill one time the first time then I analyzed every twitch and tremor, not much happened though I was nauseous. So the 20th-21 I did two days of flagyl. then stopped so Christmas would not be a problem. I fell a couple of times that week. Actually I fell a lot in December truth be told. I worried I was having an exacerbation. Then the Jan 3-8 I did a full pulse of flagyl. I did not again notice much but did fall a lot the remaining week and was walking very poorly the next week at work. Oddly, it did not feel that I took the flagyl and it was the cause of the falling. It felt more like a subtle worsening that crept up on me from nowhere and it did not a"feel" connected to the flagyl. then miraculously and suddenly on the 5th day post flagyl I was suddenly able to walk pretty well short distances. my gait was better and I felt as if a weight had lifted. And then something significant happened. I stopped needing the spasm med at night I have taken for years. I have now almost no spams and certainly EVEN WITHOUT THE MEDICINE less spasm than I had ON IT a couple months ago.

Finally! Something real I could know was not in any way related to wishful thinking or chance. I had another flagyl pulse feb 2-7 or so and I was still free of spasm med and did not get worse or anything in respect to the spasms during the pulse. This pulse I got cold sores day 4 so quit so I could take an antiviral (I really hate cold sores they scare me; I'm afraid I will get them in my eyes so I get a little weird and panicy every time. They also tend to cause worse MS symptoms a week or so later)This time I noticed no new improvement from flagyl, but nor did I get worse.

I have to say I still can't walk well at all. When I started this I was right on the cusp of needing a leg brace to keep my floppy foot up. In December I should have had one, it would have prevented some of those falls. I am thinking of getting one now. I actually have enough energy to walk a distance (where I did not before abx)but that floppy foot gets so floppy that I am at risk if I go longer than quarter mile. This was true before I started also, so I have not lost anything and though I was also floppy footed before treatment, I did not have the overall energy to walk a distance. Now I feel like I could if only that foot did not trip me. I have moments of better walking but not consistent and not getting better and better in a clear upward gain. It fluctuates and I feel worried maybe that nerve is gone from years of MS, but I have actually had some days where it seemed to work better for short distance so I tell myself just hang on it'll come.

I have to say the most difficult part of this is the mental games you play with yourself. Am I better? Is it working? What if it helps some people but not me? Oh gosh this is a real trial for a person mentally. It is comforting to know that it is SUPPOSED to take a long time so small tiny increases in function are good enough. Sarah still improves at 2+years. When I read other's stories I got the idea they did well fast and knew right away it was helping, and I also had the misperception that flagyl resulted in a sudden clear worsening . Neither of these are true in my experience. It takes a few days for flagyl to make you fall more or walk worse and it takes a week or so to get better other side and all this stuff changes subtly, almost imperceptibly so that overall you feel like it's a great big field of uncertainty.

So as a a tally of how I am doing at 6 months I have clear objective changes in muscles spasticity that the massage therapist can easily feel and a total stopping of spasm meds for nighttime spasms with less spasm now than with the med, definitely more energy, but walking is still a bugaboo for me due to floppy foot. It is the thing I want to improve the most but it has not responded much yet. I had one day where I was able to walk fairly well for a short distance, I assumed that I would get better and better from that simply by working at it but that has not been true. Particularly if I go any distance no matter how "fairly normal" the gait was at the beginning the floppiness is eventually just as it was-a completely flaccid foot. But at only 6 months and 4 flagyl pulses (one of those only 2 days), it is early yet. The times of fairly normal gait give me hope that eventually it may come back all the time.

If we assume that CPn is there at the location of that nerve as the area is cleared and other nearby nerves are freed of inflammation etc then it may come back I am grateful for the gains I have made.

I am thankful I have had the opportunity to do abx. I am better than I was in many important ways. Praise God and pass the antibiotics... So that is my patient story so far. Please read my blog for more details.. Marie

A new intallment to this patient story:

I am now at the 2 year mark.  My dropsy foot has remained dropsy and I have accepted that the black hole we saw on the MRI just prior to antibiotics starting was proably associated with foot and leg function on the right.  I still use a cane, though I rarely ever think about getting a foot brace now, so maybe it is a little better.  I can walk with a limp easily for 100 yards but after that I do a lot better if I have something to hold on to like a cane or a shopping cart.  This is so similar to my start point it is not worth trying to measure any differences.  I am still a self ascribed edss of about 5.5.

I did not talk much about my RAi in the first part of this patient story, but it has been there from day one of course.  In fact, I came down with the "MS" and the "RA" the same week.  I got sick with the first cold sores I ever had had (HSV1) and went to bed with a fever for a week.  I came out with both RA and MS type symptoms.  Interestingly I also had been hiking with many severe bites 3 months prior to this event.  My first belief was that I had lyme because it fit so nicely the symptoms package and the idea I had was that the HSV1 set it off.  No one would buy my story back in '91 though, so no go on any antibiotics for lyme disease.  I was told I had "bad karma" by my rheumy, he did not find the idea of lyme at all interesting even with the sudden onset of both issues.

Now fast forward to the current time frame with that background and knowing I am now at 2 years of pulsed antibiotics.  My RA at nearly 2 years was still bad so Dr Stratton recommended for my doc that we should consider moving toward continuous as he felt that the RA would not respond to pulsed therapy.  I do not react too much to pulses so that was fine with me.  We started that in April '07 and it took 2 months to get to a really full time tinii protocol.  Then I did about 3 weeks on and one off to see how that was, then moved to full time with an occassional "mini break" of one pill a day instead of 2 for several days if I get too depressed.  It is August 5 today and I am really comfortable with full time tini now.  I actually feel better on tini than off.  I hope to add something like rifampin or INHi in December or so to see how I react to it.

Here's the scoop about the RA lab stuff.  Pre abx my rheumatoid factor was 270-very high, high enough for one of the DMARDs.  Normal is 14.  recently my RF was 130-still DMARD high but lower than it was.  This reflects seemingly less reaction of my body to my joints which I would expect if the germ in there is getting eradicated.  This may be an interesting way to monitor overall progress.  I guess right now I would say I am lucky to have RA!  I have something to monitor!

At this point in time I am taking nothing whatsoever for my RA.  Nothing. I use simple stuff like aspercream or salonpas (my favorite of everything--buy them like I buy bread and eggs) or capsaicin (pepper) and am OK.  This is very good.  On my last mini break (one tini a day for a week to clear out a little--this occured the last week of July) my joints were oddly painfree for a couple of days.  Today, a week back into the full doses, they are uncomfortable but bearable.

One other thing that has significantly developed is a coagulation problem called ISAC or variant antiphospholipid syndrome.  This is a coagulation problem which is well known in the alternative CFSi treatment world and it is theorized in the medical literature as a coagulation issue related to infection.  It is also something that can be tested for with standard lab tests if one knows to test for it.  I take heparin for this issue and my labs are currently in the normal range.  Theoretically addressing it should greatly improve my response to antibiotic treatment.  We discovered I have this in March '07.

In a recent conversation with my husband I asked him if he thought the antibiotic treatment was working in light of my weak leg and its continued lack of function.  He said with no hesitation at all "you are vastly better.  You seemed before withdrawn and kind of depressed (mentioning the standard MSers ennui) Now you seem like YOU. "  My husband is a very conservative person and not at all given to exaggeration.  A precise and methodical person his word is absolutely true.  Everyone else agrees that my leg is the same but I am having much more stamina and energy than I used to and I am more my old self.  This is worthwhile all by itself. 

And hey, the rest of the MS researchers are working towards stem cell strategies and regenerative things.  It is possible I will be able to get one of those once I am stable and germ free .

But on another note, the Sylvia Lawry center has a self evaluation tool that makes it possible to evaluate where your progression is statitically supposed to be based on your data.  If I enter my 2 years ago data and see where I should be, I shoud have progressed by this point.  That I have not suggests to me that the antibiotics are stopping my progression. 

Continuous treatment is a different ball game than pulsed regimens.  It causes depression that needs to be respected, induces different longer reactions, and is not easy.  But I seem to be able to say that it is tolerable and at this point I prefer being on it because we seem to be seeing changes on the labs that are interesting.  I also seem to tolerate the depression better and better suggesting to me the depression of flagyl pulses is partly about the cytokines, not merely a side effect of the drug.

marie

 

 

 

Comments

 Hello, Marie. Thank you for an update. The changes on the antibioticsi are real, but incredibly slow. I am taking them over a year now, and definitely feel the difference.

Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. Use only LDNi.

Thanks Barb! You are sill improving? That is interesting. Maybe it's time for you to blog again? Stories from you veterans are always so very welcome.
blessings
marie

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Marie, It has really helped me to read your story--espec. the part about how Flagyli has worked for you. More importantly, it is comforting to know about your doubts, as i have had those feelings as well. I have not felt as buoyant over the past 2 months since starting all the supplementsi. I did it wrong--should've followed David's advice, supplementsi first, then abxi,. So, as JimK has shared, it is possible that I am reacting to the sudden addition of sup's to the protocol. It has been tough-more fatigue, and careful, methodical footing so I can avoid falling. [it is my left foot that flops] Most days I hurt everywhere and feel as tho I'm 90. It has been 4 mos of Wheldon protocol, and I keep on, strengthened by reading all the "testimonials" on the site....hoping to God that I am not one of the "too late's".

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

Marie, What you are detailing is how the treatment experience is incredibly unique to each person. It is impossible to predict what will happen from day to day. Each one of us is hoping to be well. We are impatient to be healed. We want this to be a predictable progression. But if we think back, we became ill in an irregular pattern. That same randomness accompanies recovery. I remember reading a young woman's website who was disabled from MSi. She was a writer and became a prisoner on her couch for a long time because of blindness and the inablility to walk. One day, the illness seemed to resolve itself and she regained her sight and ability to walk and went back to join the world. She put up the website to tell her tale. I was struck by her story and it seemed to me as if some infection had just burned itself out and her body began to rebuild itself. But it took a long time. (Funny, at the time I wanted to be that girl!) It all comes down to this. If we believe that Cpni caused us to become ill and we are killing it, then we will get well. Mother Nature will help us (with the aid of many supplementsi!) You will get better in time as she does her work. We all will! Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

KK2 what is too late? In my opinion if you have CPn then no matter how late it is you'll be some better just by treatment, even if you need stem cells or something else. And gosh we are so early how can it be a done deal at this point? I read in a rehab magazine that you can expect rehab to take double the injury time to recover ie2 months equals 4 months of rehab to get back. So if this holds true I've been pretty disabled for at least a year if not two so now I have a recovery timeline of 4 years. I can imagine getting stem cells to hearten up my leg, or possibly some other kinds of regenerative strategy at some point but I sure don't need CPn there to invade the new cells at that day! Along those lines, ALCAR is a bit regenerative itself. again we have to stimulate and work it to get the nerve to come back if it's going to. Just this AM Rica admonished me to work on getting my toe up when we chatted online. It's hard to sit in a chair and pull up that toe, sometimes it will not move at all, totally unconnected to my brain. But other times I can pull it up some . This helps: If you have a toe like this or a leg that doesn't move or something, close your eyes and REMEMBER HOW YOU USED TO DO IT... then while holding on to that memory, move the thing in quesiton. You'll find it does better.

Boy we are lucky ot have this forum to share with. thanks for the feedback
marie
ps thanks to jim who went through and fixed my typos on this patient story too. I type so badly it's amazing anyone considers me other than a moron to begin with...I was very tired it was very late. I planned to work again in the AM and fix it then but he beat me to it...thanks Jim!

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

KK2

Your history is the most like mine I have heard, just somewhat more concebntrated.  I began abxi in Sept. 04 with no supplementsi and added them very haphazardly in later months, adding NACi latest of all in Aug 05.  This I can tell you: at 4 months I had gotten so bad that I was barely functional.  In my dim mind, I knew the only hope was LONG-term response and it was.  Not till May did I realize I was improving.  So, I will tell you what I told Marie at this very point- hang in there and keep on taking your "stuff".  Got something better?-  maybe in mind, but are you capable?  At some point we seem to lose sight of the very real fact that we only get worse if we are PPMSi and will NOT get better if we are "lucky" and are only RRMSi.  Sarah told me and I am just passing it on.  Stay the course!  You can do this.  We are tough or we would not have gotten this far.

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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

RAVEN I agree it is variable from person to person as you say just as the illness is so the treatment. Thank you for pointing it out.
Blessings
Marie

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Rica, you're right, and regardless what sort of MSi you're afflicted with, why would it make sense to let C.Pn. live in your body?

It's not living in there to do us any good. "Get rid of it, regardless," seems reasonable to me. However, I don't have MS, so if I am just blathering, say so. I wouldn't want a newbie to come by and think I knew what I was talking about if I don't.

 

Ron 

On Stratton protocol for CFSi starting 01/06 (NE Ohio, USA).

Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Did I say this? 

"At some point we seem to lose sight of the very real fact that we only get worse if we are PPMSi and will NOT get better if we are "lucky" and are only RRMSi.  Sarah told me and I am just passing it on."

Rica, I'm not quite sure what you mean.  I don't think anyone is "lucky" to have any kind of MS.  Anyone can get worse at any time.  I suppose I thought I was lucky for years then it suddenly hit me full force.  In a way it is harder for people who are RRMS because they don't have anything hard and fast to grab hold of to let them know for certain that they are getting better, especially if, like me in the early days they can go for years without a relapse. 

KitKat, I doubt very much if you are "too late."  I'm not sure if there are such people.  There are certainly people who think they are too late an so give up too early.  Four months is nothing.  Where was I four months into the treatment?  I can't remember fully, trying to paint but not pleased with the results, hand week and floppy, right leg likewise, staring at my bike in the hall, thinking that I would never dare use it again so might as well put it down in the cellar.  For me the worst was yet to come, at six months plus but luckily it didn't last long and coincided with my follow up MRI which showed I had absolutely nothing to worry about.  I'm still not perfect by any means, doubt if I ever will be, but I'm working at it!

As Raven said, we all became ill differently and so all will get better differently.  Nothing is carved in stone.  Marie especially is being incredibly brave by getting better so publicly.  I didn't do that, I just kept quiet until one day I realised that many people could and should be helped by my coming out.

Ron, I don't think you are blathering!Smile.....Sarah

 

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.

Sorry, all.  I am not verbally gifted on the best of days, which is why I became a musician.  My sister "yelled" at me, too, when I said "I like to make waves"  I should have begun a new paragraph- Sarah passed on "Stay the course!" - maybe not verbatim, but certainly in substance.

As I always mean to communicate, but sometimes fail, my admiration for all here is unlimited.  We are a team only matched by my 4 sisters.

Ron, you definitely do not blather!

Rica  

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

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

Rica, I didn't yell at you!  As I said, I just wasn't sure what you meant.  I certainly did say "stay the course" but probably, as you suggest, verbatim.  By the way, I know probably more musicians than anyone else, so please carry on making waves because you do it so well.......SarahSmile
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.

Marie, this is the best thing someone, especially your conservative, non-delusional husband, could say to you: "In a recent conversation with my husband I asked him if he thought the antibiotic treatment was working in light of my weak leg and its continued lack of function.  He said with no hesitation at all "you are vastly better.  You seemed before withdrawn and kind of depressed (mentioning the standard MSers ennui) Now you seem like YOU. "  My husband is a very conservative person and not at all given to exaggeration.  A precise and methodical person his word is absolutely true.  Everyone else agrees that my leg is the same but I am having much more stamina and energy than I used to and I am more my old self.  This is worthwhile all by itself."  I hate the idea of not being me.  I really wasn't wasn't for a while and didn't realise it, which caused much agony to DW.  Now you are YOU again and I am ME, bracing to set the world to rights, even if we do limp a bit sometimes..........Sarah        

An Itinerary in Light and Shadow  

Stratton/Wheldon regime since August 2003, for aggressive secondary progressive MS.  Intermittent therapy after one year. 2007 still take this two weeks every three months. Still slowly improving with no exacerbation since starting. EDSSi was 7, now 2

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.
'Now you seem like YOU.' Exactly what I said to Sarah! She speaks truly. the changes to character and mental function brought about by rapidly progressive MSi were far more distressing to me than the rapidly developing physical disability. I felt I was losing the very spirit of the person I loved. Fortunately mental function has returned completely on treatment. For this I am profoundly grateful. I know I myself have undergone a profound existential change as a result. I'm beginning to understand that we tend to measure the easily measurable and shy away from considering phenomena which cannot be measured. So we tend to hold dear the data which are easy to bring to hand; the metres walked, the miles cycled. We tend to be oblivious to improvements which are not readily assembled into data but which are really far more important. Such an example is the regaining of what it is to be oneself. I've noticed that the return of insight can itself be distressing to the sufferer (I use this word in the literal sense of 'the undergoer'.) 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 105/75]
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]

David, I nearly always notice your signature. Maybe it hasn't registered in my befuddled but improving mental state, but I see that you are completely off abxi. Even our 19th century pioneers eventually reached the west coast. Congratulations! I hear it's really beautiful.

Marie, your updated story is a model full of promise. I know that you will continue to grind your way through what I believe is right for you, based on what you wrote. My admiration is unbounded for your ability to do it. As for you droppy foot, the moments of good walking I see as sparkling, undeniable standards for the future - but I can't say when it will come. My own experiences say this is true and the fact that you have them, especially at times on tinii, just strengthens my intuitions.

 

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 44 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

David - Beautifully articulated (as usual).

 Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAPi 5/10/07. Doxyi 200 mg, AZI 250mg MWF, NACi 1800mg, 2 Scoops Lauricidin, Colloidal Silver, Novantrone, Prednisone and daily pound of supplementsi.

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Thank you everyone. DW I want to acknowledge the distress of discovering that I had not been myself. It is much easier to not think on it. I told myself I was thinking just fine (I am somewhat cerebral by nature) but what I was unable to percieve was the flatness and loss of what my husband calls "YOU". Locked into my personal prison I was blind to it. Sarah, yes even if we do limp sometimes, so what! it's good to be ourselves. Rica I hope my leg comes back somewhat, it seems like it will work for a little while but then quits, that nerve pathway is just not up for normal sized walks at this point. On the other hand if a person cuts a nerve it takes about 2 years for it to "come back"... *IF* it will. I can hope that once free of germs for 2 years maybe some more function will return. This could be a very long timeline.....But that's OK. The old timeline was how far to nursing home care, I prefer this new one of how far can I recover in coming years? marie On CAPi since Sept '05 for MS, RA, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxyi 200, Azith 3x week, Tinii cont. since April '07, all supplementsi. "Color out side the lines!"

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Wonderful news Marie, to have yourself back is a very significant step that will likely increase and improve your overall rate of recovery, I'm very happy for you.

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.

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.

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