LifeOnTheIce's Story: Cpn & MS

My first encounter with MSi happened in December, 1987 following an enormous “flu”. The right side of my head went numb, as was my mouth and tongue. There was a questionable tingling on the left side of my body, barely discernible, that even I had doubts. That event coincided with my new job and I ignored it telling myself that it was a Bell’s palsy. The trouble was it looked much more like the fifth cranial nerve palsy and even that seemed to be more extensive than expected. I decided to ignore the whole thing. It resolved in several weeks leaving me with hyperparesthesias of my scalp for the next year or so, and permanent, almost unnoticeable minimal right upper lip atrophy.

      In April 1993, I had a sudden problem with the right eye. Vision became blurry, pinkish, there was aching in the back of the orbit. I could not ignore it this time and paid a visit to my friend the ophthalmologist. She could not see what was wrong and delegated me to a retinologist, who after the myriad of the tests was also at loss. In meantime, my mother, my husband and I, all three physicians, decided that I should take high doses of steroids which I did. We went for vacation to Arizona. I had wonderful adventures there getting swollen like a balloon from the water retention, then going into acute, prerenal failure, to be followed by a very funny diuretic phase. When I came back I had a brain MRI, which showed two lesions, related to both events. The differential diagnosis was: infarcts, migraine, and MS. My eye problem was already going away, I chose to believe it was a migraine, even though I had never had headaches, and I kept working and paying more attention to enjoying my life. Somehow, I felt it might not be long till another disaster strikes.

     The interim was uneventful. Here and there I had transient right facial numbness, or tingling, for which I promptly took aspirin and life went on. My mental faculties were going downhill, my memory was slipping away, but when I asked around about it, the explanation was always the same. I had too much to remember, everybody in my situation would be the same. I became a bore.  Something very weird happened. My life became surreal. I was not participating in it any more. I was a bystander. Nothing truly bothered me; nothing made me mad, excited, or even sad. I became apathetic, still able to smile.

      In August 2002, I started having continuous right facial numbness extending to the neck and scalp. I became tired and slept after work. I started steroids again. The results were not satisfying and for the first time in my life I decided to see a neurologist. By the time I went for the appointment in mid September, I was quite ataxic on the left side, had problems with balance, could not walk strait and stumbled often.  The doctor was not alarmed, told me that it was MS and ordered an MRI of the spine and the brain, MRA of the neck and the head, for the middle of November.

      I kept getting worse. I could not feel the extent of the left side of my body any more. I had multiple minor injuries trying to enter the car, any unplanned movement could send me down to the ground, and the stairs became a real challenge. I became unbearably fatigued, yet I would wake up every hour of the night scared to death, because I was a half-body creature. I lost the ability to think, read and concentrate. I had no memory. I was losing important things. I forgot my beeper number and the answering service number, the locker combination in the hospital. My written words were missing letters, my handwriting became sloppy. I did not remember words, names, dates. I forgot about the patients I had to discharge home, I did not know the day of the week any longer. I became disoriented in familiar surroundings. Despair. To top it all at the beginning of the November I became so stiff I had great difficulty to turn around the corner.

      I was very stiff for two days. The first day (Sunday) I somehow managed to do my hospital rounds. My elderly patient was very ill, and I did not feel any better. When I was leaving, a security guard approached me: “Madame, are you alright?’’ “Yes, I am. Thank you.” The next day I went to the office, as always. It was the worst work day (seven hours) in my life. I barely could make it from room to room without hitting the walls. Things were falling out of my hands, the patients were helping me pick them up, and they helped me with the dates on the prescriptions. I felt enormously tired and miserable wondering how many of them suspected that I was drunk or on drugs. I had to attend the delivery that evening, but instead of going directly to the hospital, I went home and swallowed 120 mg of methylprednisolone. I caught the baby on time.

      The next day I went to see the neurologist, got the prescription for steroids, and my appointment for the MRI was bumped up. First I had the spine and MRA done, waited 30 min for the copies, checked them: normal. Good for me! The next day I was given copies of the MRI of the brain and asked to wait while my neurologist was contacted. I quickly examined the copies and I almost had a heart attack in the waiting room. Horror petrified me. At least one-third of the brain was included in solid demyelinization, not to count the scattered lesions all around. And there was a brain edema as well. All, I was naively prepared for, was the third lesion in the cerebellum.

     I was admitted to the hospital an hour later, my good friend, the cardiologist, acting as an attending. It was a beneficial arrangement. He discovered that my cholesteroli was 274 and proved that at least my heart was in top shape. I was given an IV decadron, while a whole group of the neurologists argued with the radiologist, if I had a brain tumor, or encephalitis">i.  I had a neurosurgeon and an infectious disease specialist on consultation. Thanks to the brain edema I escaped a brain biopsy and a lumbar puncture. Both procedures when done while the brain is swollen carry the risk of the herniation and death. I was so confused, and in shock, I would have agreed at that time even to have my head amputated. All tests for encephalitis came back negative, and given my long neurological history, the diagnosis of MS was accepted. I was discharged home and had to follow up with my neurologist in 3 days.

      I came home as an altered woman. I became deeply depressed. All I knew was my name and that a great injustice happened to me. There was no way out. I was unable to accept my future, same time I could not do anything to change it.

      I became a house idiot. I was treated like a spoiled child. My family did not know what to do with me. They were scared preparing themselves for the worst, at the same time trying to convince me that people without marbles still can enjoy their existence. My husband cooked and served, as always.

      My husband and I went to my appointment. The neurologist was an MS specialist known to both of us. We send most of our patients to him and like him very much. He was very sympathetic. I swear I could see tears in his eyes. His decision was, however, to refer me to a university professor, his old teacher, the real MS specialist. In the meantime I was to finish the steroids. I had gotten a book about MS from him as well.

      The appointment was made with the professor for late January. We made another appointment with his close co-worker for December 9th, also at the university. At that time I already was thinking about Lipitor. There was information about how well laboratory mice with experimental autoimmune encephalitis fared on it. The dose was 100 mg per kg. I decided for 80 mg a day. I went to see my friend who was badly affected by MS and not responding to anything. We talked a little about our plight and I wrote him a one-year prescription for Lipitor 80 mg as well. We started taking it on November 29th.

      In December I went to the university, my MRI was publicly admired by a bunch of the residents and the specialist; I was examined and sent for the VEP while they were looking for someone to perform a lumbar puncture on me. The person was not found and I was advised to call after the Christmas. When my husband asked what to do in the meantime we were assured that nothing would happen.

      About one week later when I was driving to work I realized that a big pot my head had been squeezed into was gone. I felt different, free. From that time I started improving very slowly. By the end of January I had no neurological symptoms, except for occasional stumbling and painful cramps in my left leg. The cramps disappeared completely after taking 200 mg of vitamin B1 for two days (my mother’s advice).  For the first time I took an interest in supplementsi.

      My MRI of the brain was done on February 28th. The impression was: a marked decrease of swelling and enhancement noted throughout multiple white matter lesions within the cerebral hemispheres, cerebellum and brain stem. There was no associated mass effect or edema related to these lesions. There was only subtle enhancement seen within several of them.

      In March I had the opportunity to participate in a lecture about new treatments in MS given by the above mentioned professor in our hospital. I was the only one with MS, the rest of them were neurologists and neurology residents. I was taken aback by his contemptuous attitude towards MS people’s intellect. As damaged as I was at that time I felt offended and very glad that I never became his patient.

      In May, I came upon the MS-Direct diet and recommended supplementsi. It became a part of my life since that moment.

      In August I had another MRI and at that time there were no active or new lesions in my brain. I paid a visit my neurologist friend to brag about it. On the way back I got lost in my car quite close to my home.

      I think my depression began to ease a little in May, 2003. The first sign I noticed was my appearance in the laundry room. Till May I did literarily nothing. I did not see any reason to do physical work. My presence in the world was inessential. I had no meaning. My life was counterfeit. I existed through my work and my patients’ problems. I felt like an impostor and often thought how easy it was to deceive others. At the same time, I had greater understanding of misery and tried to get to the bottom of suffering. I became a master in solace.

       At the end of June my whole family went to Spain for two weeks. We had really a good time there. My physical endurance was the same as others. I became the designated driver and lead them through the most treacherous mountain roads. My self-esteem improved markedly and I became well- disposed to my life.

       That summer I joined a few different MS forums and tried to spread information about statins. I had no luck. No one believed me. The general consent was that I was trying to undermine the blissful state of MS therapy, jeopardize sick people's health by recommending poison, and if I was better the reason was solely due to me being in remission. I hung around, but did not post much.

       In the meantime my memory was improving slowly. I still had to be on guard during conversations and heavily rely on my notes in my practice. I began reading books again.

       In November we went on vacation to the Dominican Republic. This vacation was paid one year earlier, but I ended up in the hospital that week. As unbelievable as it sounds I never stopped working. I was back to work one week later.

        In April, 2004 I came upon Sarah’s report about the antibiotic therapy. Our stories were so alike. The final result of our treatments was the same. Dr.Wheldon’s regimen offered a potential cure. My therapy would have to be carried out ad infinitum. I decided to take a risk. I scheduled another MRI of the brain to have a reference point and ordered Roxithromycin via the Internet.

       My MRI was unchanged since April, 2003 which was a positive finding. While waiting for Roxithromycin I decided to try the LDNi. The very next day after the first dose it appeared as if a heavy load was lifted from my shoulders. It was unbelievable. I felt like a teenager. All that time I considered myself physically in top shape.

       In June I stopped Lipitor, started the antibioticsi, continued with the LDN and went to London with my daughter for a ten-day vacation. Aside from the unexpectedly cold weather we enjoyed our time there immensely until I added Metronidazolei to Roxithromycin and Doxycycline. After about two days on Flagyl I started having tingling in my face and the left thigh. I finished it, however. I returned unhappy to the USA. I promptly restarted Lipitor and decided that the antibiotics were not for me.

      About two months later I realized that my cognitive abilities exploded. The only logical explanation was that wretched Flagyl. So I attempted another course of the antibiotics in October. Same reaction happened again. I returned to Lipitor and was quite pleased when all neurological symptoms were gone.

      In December, 2004 I joined another MS board which was much more fun for me. After a short while I met someone there who was taking the antibiotics for presumed and early MS. That person explained to me that the recurrence of  the MS symptoms, following the antibiotics was a Herxheimer phenomenon. Till that time I believed the “die off” signs were chills, fever, headache and myalgia.

     I stopped Lipitor again and began to take antibiotics on February 4th, 2005. I remain on the LDN. My regimen is Doxycycline200 mg and Roxithromycin 300 mg daily. Every three weeks I add a five-day pulse of Metronidazole 500 mg two or three times daily, depending how my stomach feels. I had no ill reaction to Flagyl, aside from a one time episode of feverishness with the second pulse.

      It has been seven and a half months since the institution of my therapy. So far the course has been uneventful. I am normal, not tired, or sleepy. I work my usual hours. I feel increasingly confident with my memory. I hope to eradicate Chlamydia pneumoniae from my body.

      Recently I experienced something that was gone for a very long time. I felt like my old self.

      In February 2006 I will have an MRI of the brain to see if it has improved. Since I'm on my own, and my only experience with the neurologist, was essntially during my hospitalization, I'm not sure whether I qualify as RRMSi or SPMSi. I assume that if it wasn't for my intervention, I would have the latter.

Comments

This is a fascinating account. I find it to be very interesting how it takes a "patient" of this illness to find a proper treatment. Who knows what may come of this, but I do hope it will result in the eventual demise of the current "ostrich" attitude about msi by most neuroi's. My life with ms has not been half as exciting as yours, but I do see so many similarities and anxiously anticipate the arrival of my meds from New Zealand. Thank you for sharing your journey with this awful malady. You may never know how many people whose lives will be changed for the better because of it. Kathy :)

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.

Thank you, Kitkat. I hope my story will help others. Excitement part of it comes from getting to the end of the road. I don't wish anybody goes there.

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

Thank you for your story

 

Lifeontheice, that was well-told. It takes a lot of courage to tell your own story, or even to face your own history, but so worthwhile: it will help others.

 

I search for analogies in order to explain to others; none are quite satisfactory, but in my case, with Sarah, it was like helplessly watching someone standing between the rails on a railway track, unable to move, staring at the approaching train: it seemed to be travelling slowly, but that was just a trick of foreshortening. In reality it was going very, very fast. Yet somehow that train was stopped. 

 

David

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]

Writing my story took much more hard work than courage. Initially, I was going to use my previous forum entries, but instead I decided to start from scratch. I cannot think of a better comparison of MSi, than the one you made. As with the train, one is aware of the eventual outcome, but the true terror lies in the awareness of the situation and the powerlessness.

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

It seems to me that although we (myself certainly included) all make the assumption that Lipitor and the antibioticsi' combinations are alternate and mutually incompatible treatments, there is actually no logical reason to think so. The antibiotics kill off the pathogen, and the resulting debris causes MS symptoms, often worsening symptoms.

Statins, on the other hand (Lipitor included) reduce inflammationi. In theory, statins would help reduce the ill-effects of the Herxheimer response.

 If you read Dr. Stratton's comments on Liver Cautions in the Handbook, you'll see he refers to statins as "antichlamydial," so it seems their effect isn't just anti-inflammatory alone.

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

 

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

Wow, cool story. Interesting to hear an MD perspective on getting sick.

An impressive and well told story, Lifeontheice. Thanks for the work of putting it together. I think it belongs in the Patient Stories section. Your gallows humor is appreciated too, at least by my own sense of humor. I loved your phrase "that wretched Flagy" when you recognized it was the culprit in your improvement. Just how it feels. And your description of your family trying to convince you that being "without marbles" is just fine. Glad to have you here with us.

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

 

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

Thank you for moving the social life over here. I was checking the daily events two days ago and I found myself right under my story. I owe you an update on my MRI. I had it on February the 8th.

Here is what was written:

 Procedure/Technique:
Multiple axial, coronal and sagittal MR images were obtained through the brain without and with contrast, and they were compared with 05/05/2004.

Findings:
In T2 Flair axial and sagittal images, multiple regions of high signal intensities are elicited in the bilateral subcortical and periventricular white matter. These abnormal areas of high signal intensities are identical in size and shape in comparison to the previous examination. There are no new focal lesions to suggest a recurrence or progression of the demyelinating process. In the postinfusional study, no abnormal enhancing brain lesions are detected to suggest an active disease. There is no evidence of intracranial hemorrhage or any type of mass lesion. The ventricular volume is normal.

Impression:
Stable and unchanged multiple bilateral periventricular and subcortical white matter lesions. As described in the last study, the pattern is somewhat atypical for multiple sclerosisi and other etiologies such as infectious process cannot be excluded. The overall intracranial findings are identical with the last study.

The MRI from May 2004 was identical to the one from August 2003. There is no change in the MRI for over two years. There is huge change in me. My thinking, memory, concentration, interests are getting very close to what other people possess, or what it used to be a long time ago.

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

So now there are three of us!  Well, three out of three since you, Rica and I are not only the people who have been doing it the longest but have all now had follow on scans showing basically the same thing.  Was the update written by a radiologist or a neurologist?  Because this couple of sentences are very funny: "As described in the last study, the pattern is somewhat atypical for multiple sclerosis and other etiologies such as infectious process cannot be excluded. The overall intracranial findings are identical with the last study."
Please copy this on ThisisMS as soon as possible!.....SarahLaughing
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.
It was written by a radiologist. I did not make the appointment with the neurologist yet. I wii post it on ThisisMS.

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

I've just seen it.  Thank you!  And Rica, thank you as well, though we must stop meeting like thisCool..........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.

  lifeontheice<- That's a great report! No change from the 2004 and 2003, improved symptoms cognitively and functionally, I'd say you have this bug on the run! Hey, maybe you  know. A lot of hospitals have all their xrays digitized so doctors can pull them up on the screen. How do they do this? I'm aching to get your and Sarah's MRI's in the image gallery.

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

 

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

     I've been given a disc last time. Before they gave me films.The radiologist was able to pull all of them except for the first MRI (the one with the brain edema and multiple active lesions) from the computer. I would have to ask if it is possible to get them all on the discs. It would be interesting to juxtapose the first and the last MRI.

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

MRI scans. I read that others are arranging these such that they have evidence of change - that's fantastic; it would be great to have this hard evidence. Following my first worrying event I was told I would need to wait for +12 months for an MRI, without insurance I paid for one - the results were "inconclusive". When I had the next (major) event again I paid privately for an MRI. Now with 2 MRIs on file and a subsequent LP there was sufficient for a positive "classic" MSi diagnosis. From that point I am fortunate with our UK NHS getting me onto Copaxone rapidly, and meeting the costs. I fortunately could afford to accelerate the diagnosis which got me on the immunei-modifier, and also primed me to research what else might help - resulting with me finding David Wheldoni's site. I am supported by both my GP and Consultant in trying this treatment - but I haven't requested further scans. It may be I improve but without scan evidence of change, but at least I managed to get a diagnosis before getting extremely unwell! This site helps greatly, but there is no responsible expert pointing to a graph and explaining to me where I am on it in the recovery - i just take snippets from all the postings that suggest I am experiencing the "right" sort of thing. I finished 2nd Flagyli pulse 2 weeks ago and need to give myself a longer break - I need to see an upturn so that I can create my own "treatment curve", so that I can confirm that Flagyl beating me up is temporary, is a positive. Prior to the Flagyl I was feeling much better - naively thought I was on a quick fix; can't believe post-Flagyl effect. Plan to give myself another 2 weeks to see how I feel. (I finish typing and wonder whether to "post" - it's a therapy in itself to do, but in the spirit of the site I think submitting adds to the material available to others; we don't have much elsewhere...thanks to all).

Diagnosed RRMSi May 2005; started Copaxone August 2005. Found David Wheldoni's work October 2005 and started protocol November 2005. Added Atorvastatin 20mg May 2007.

Submit, of course!  As Sarah says in her story, this is not an easy fix.  Those of us undergoing it should be forthcoming, as others need to know the good, bad and ugly of the treatment.  Some days are good, some are not, but documenting all of it helps others realize there is still ultimate improvement, though an individual day or week may be crummy to awful and it might occasionally feel like you are backsliding. It's the old, two steps forward and one back.  But, at the end of the day, you're still one step forward, rather than not moving at all, and that's what we have to focus on. 

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

Hi all

I must address each of you three individually- 

Barbara,

Enthusiastic congratulations to you on your MRI!  With those of us on the fast downhill track, that is without doubt the best news possible.  Maybe in a few years we can get another one that will equal Sarah's and have some dim or fade away.  For the rest of it,  I am as happy as I can be.

 r2004, 

You do seem to be experiencing the "proper reactions"!   I am coming up from my 19th pulse and while it is nothing like a year ago, it is still an undertaking; something like skiing the Olympic downhill without poles.  Dr R (husband) says "normal patients don't react to Flagyli like that"!  He is sorry we have to go through this but he sees me getting better most days and with this  an "incurable disease", well.......  Anyway, SO glad you are here!

To Mack the eloquent, passionate!  Thank you!  It is such a good thing for us each to be able to say "I do that"!

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

I am wonder how he knows, that "normal patients don't react to Flagyl like that" ? There is quite a big community of people in Prague, who often travel to India, so they often use metronidazol to fight against amebas there. Most of them have ugly reactions on metronidazol, in spite of the fact they are normally healthy.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years

Lala, I wonder what kind of ugly reactions? And do you mean people who are using metronidaole to prevent amoebiasis, or people who have come down with amoebiasis?

 About 20 years ago I was given a course of flagyli for suspected giardia. I got so sick on it by the 5th day of a 10 day course that I had to stop. I tried again, same thing. I know (now at least) that I had Cpni then. Given that Cpn is so common that by age 60 70% show positive titers, it's not surprising that a number of people have reactions to Flagyl. I also have to say that Flagyl always made me nauseated, which is why I use Tinii.

Dr. Stratton said the same thing to me: normal people taking flagyl don't have reactions to it (like inflammationi, brain fog, pain, feeling like old chewing gum on a bus floor!). 

On Wheldon/Stratton protocol for Cpn in CFSi/FMSi since December 2004.

 

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

Ice: I'm so glad that your MRI shows nothing new; that’s wonderful.  Lala: Metronidazolei is unpleasant to take; not many would disagree with that. It tastes foul and has a nasty metallic flavour. It is given to many people in hospital who are suspected of having an anaerobic infection. It causes few serious reactions, however. On the other hand, in the treatment of chronic Chlamydia pneumoniae disease, after protein-synthesis agents have been started, it can knock you sideways. I know this from personal experience.
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]
Yes Jim, I think that is the ultimate question.  Most of the Flagyli side effects noted as common are the ones we all have when taking it.....so does everyone that experiences them have a Cpni load or is it just a nasty med?!  I have believed as you do that it is the former, but I still have this little doubt in my mind about making myself sick when taking it.  Since I haven't been on it long enough to note an improvement, it takes alot of faith to keep going.  The only thing that helps me is hearing someone, anyone on this site tell about definite improvements in their condition that could NOT just be remission.  I don't have a diagnosis to be treating, just "nervous system hypersensitivity, could turn into MSi", but I did have a high Cpn antibody titer.  Thank you, thank you for creating this site and for everyone who shares.  You have given me hope.

Golfbuddy

SPMSi and PPMSi people like Sarah and me don't have remissions.  I had a right leg that gradually filled with sand while my head slowly filled with fog and not much else.   Nothing got better- only worse and worse.  Even last Nov.  I wrote that coming out from Flagyli could take up to a week.  I woke up yesterday morning - day after last Flagyl - and even before opening my eyes I exclaimed "NO FLAGYL!"  Today I feel better than for almost 4 years.   Some pulses are better than others.  Two ago and I discovered running and this time my right ribcage and down is almost normal.  It has been totally numb for almost 11 years and for about 6 months has been regaining sensitivity.  Please have faith- if you have a positive titer without too many symptoms, you are one of the most fortunate.  You may end up normal.   As much as I am improving, I will never be what I was, I think, but I will sure be happy with what I get!   You're right, it takes lots of faith, but boy is it worth it.

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

As I know travellers to India use metronidazolei to treat amebic infection, never take to prevent it. They report problems as beeing very nauseous, they often cannot manage to take full recommended dose, aching whole body, big fatigue, they had to have a rest. It is only my personal experience with these people, not statistic. Maybe all have some cpni load or some other undiagnosed infection (e.g.borelia), is the cpn only organism which produce such nasty reaction in combination with metronidazole?

Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years

 Lala- You are right that other infectionsi like borrelia can cause reactions. i'd say that the nausea is a common effect of the drug itself, but the aching, flu like feelings is more likely die-off of some endotoxic anaerobic organism. Cpni is not the only possibility.

On Wheldon/Stratton protocol for Cpn in CFSi/FMSi since December 2004.

 

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

Barbaro , podaj mi nazwe tego antybiotyku.

Jakie jest jego dawkowanie.Ciekaw jestem tekiej kuracji.

Biore ziola dra Tenzina(tybet) Chcialbym sprobowac wariantu z antybiotykiem.

Podaj prosze odpowiedniki polskie. Mieszkam w Polsce.

Pozdrawiam

moj adres anbit1@wp.pl<

Zbyszek

Good morning, I would like to announce that two weeks ago I completed my therapy and stopped antibioticsi for good. I consider myself cured after four years of CAPi, six years after my hospitalization, and 21 years since the first sign of multiple sclerosisi.

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

And good morning to you!  Welcome the elite club of stupid, ill-advised people who think they no longer have MSi<.............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 improving bit by bit and no relapses since finishing treatment.
Congratulations! I can't wait to join the club :)

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Hey, congratulations!!!!

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

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