Does anyone get well?

I'm new to the group, and hopeful, but so far all of the posts I've seen are from people who are still in treatment, and they are generally having a hard time. It would mean a lot to me to hear from at least a couple of people who got well. Russ http://www.potbellysyndrome.coms<

Hi Russ

You have spoken the thing that I think nobody knows.   We are a work in progress and I suspect some will go further than others but we have all been or currently are in a place we want fervently to go beyond.  This is a remarkably intelligent, knowledgable, hopeful, and  indefatigable (in MSi that is the usual opposite) bunch doing a great adventure.  The neat thing is that those of us who have done this for months  with a fair trial are all getting better.  At least I have not personally heard of any who are not.

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 have CFSi. It took me ~18 months to go from well to the pinnacle of my illness, and I started antimicrobials about 5 months later. I would get fatigued from sitting in a chair for a couple hours and was very sick, couldnt leave the house except for doctors and had to spend much of the day lying down. Recovery was very slow, but now, one year later, I can run 3 miles at 80% of my pre-illness pace. My cognition is back to 100% normal. But its not functionality that matters to me as much as feeling good... my illness also involved severe malaise/pain/nausea/whatever, depression, and anhedonia that made me suicidal. Basically I felt like I was 300 years old and had worked in a salt mine all my life. It took 9 or 10 months of treatment before that fell away, and I thought it would never happen. Now I feel normal most of the time, despite having the odd muscle twitch or a bit more soreness or tiredness from exercise than before I got sick... etc etc. I still get straight-up sick when it rains, so I'm moving to the southwest US. When its nice outside, I have no symptoms that I care about or that stop me from doing or feeling anything at all, except for my OCD. I've been very fortunate so far, and am still trying to go further. More details may be found in my other posts on this site.

Hi Russ- A good question. While most of us are indeed a "work in progress" there are a few notable exceptions, and they are spectacular. Sarah Wheldon (see the patient stories link) is one-- not only should she not simply be either dead or completely disabled, since MSi is a one way ticket, but has even recovered function and shows fewer lesions than before treatment. As a doc, you know that this is "impossible." Another patient story is her husband David Wheldoni, with otherwise untreatable cardiac/circulatory issues. Eric Johnson gave you his remarkable CFSi recovery, although he had not originally identified it as Cpni, his protocol is the same-- the TInii being the secret ingredient (Eric- your own special abxi Big Mac!).

If you look through the Stratton patent materials linked on this site, you will see at the end of those publications quite a few case descriptions of those who were treated with the protocol and what they recovered from, and some who did not. If you read more here on the site, you will find a lot of reports of significant improvements to starting conditions. You also find ones like mine which have been definitive halts to progressive decline (CFS in my case) and gradual improvement discernable amidst ups and downs of treatment. In fact, I will post about this in my blog in the next couple days.

We don't know here who has dropped out of treatment because they got worse or did not get better, as they drop off the site perhaps. Also, we have only been here since fall 2004! 

On Wheldon/Stratton protocol for Cpn in CFS/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

Hello Russ!  Pleased to meet you at last.  You presumably know about me already, from other sources, but yes, I would say that I have "got better", although I still have a way to go to improve my walking, say, but my progressive MSi is definitely in full retreat, no new events now for just short of two and a half years.  I am certainly neither in a wheelchair or dead.  "My neuroi" might say "Oh, I can't see that," but he won't even look.  David has recently added a picture of me defiantly standing on one leg, hands on hips, to his MS treatment site:  
And I have the later MRI scans as evidence.  Then you have Katman, LifeontheIce and Eric and David as further evidence.  Guner also has managed to stop his progression, but his pre-existing damage means he is still at the moment in a wheelchair, but he shouldn't, by all accounts have managed even that.  He is everyone's hero.
People will experience all sorts of different things during treatment: I actually came off relatively painlessly.  I think it all depends on where the pockets of infection are.
By the way, you have got an "S" on the end of your website.  I had to cut it off to be able to look at it!.....SarahSurprised
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.
I've been on the antibioticsi for between 8 and 10 months now.  I have recently switched to isoniazid, rifampicin and amoxicillini.  Over the last month my night spasms have been very greatly reduced and I've only had to take anti-spasm medication on two occassions over the last month.  Previously I have had spasms at night for 1 year and 3 months continuously.    It is quite unusual for a symptom to go away after such a long time in continuous play.  My walking is still pretty terrible though.  The antibiotics seem to work in an imperceptibly slow way.
Started CAPi April 2005, right leg motor function now worse

I want to thank everyone who replied to my question about people recovering. The first thing I had better clear up is that I'm not a doctor--I'm just a patient with CPNi. I was diagnosed with CPN and treated with clarithromycin in 1999. I experienced a miraculous recovery, but it only lasted a couple of months, and I've been trying to recapture those two months for six years.

Dr. Per Marin and I have written a book showing how germs cause obesity, high blood pressure">i, type 2 diabetes, and heart diseasei. CPN is the most important germ discussed in the book.

I look forward to benefitting from, and contributing to, the knowledge and experience gathered on this website. Russ http://www.potbellysyndrome.com<

 

I've been trying to get Kaiser Permanente to put me on a CAPi for my heart and lung problems since 1999. Email: russ@PotbellySyndrome.com< Website: http://www.PotbellySyndrome.com<

Alexandra, you write that you are taking isoniazid, rifampicin and amoxicillini, so you obviously have a doctor that believes in the mutlti-drug protocolsi. My problem is that my HMO steadfastly refuses to implement any such protocol. It's not because they are worried about the money, it's just that they don't do anything "experimental." How did you find/persuade a doctor to prescribe long courses multiple antibioticsi? Russ http://potbellysyndrome.com<

I've been trying to get Kaiser Permanente to put me on a CAPi for my heart and lung problems since 1999. Email: russ@PotbellySyndrome.com< Website: http://www.PotbellySyndrome.com<

Yes, people often get better. I was headed for deep cardiovascular trouble, I think. My morning BP is normal now, my pulse soft and regular; all the millions of ectopics have gone. The only complaint I have is a mild labyrinthitis. I suspect it may be caused by endotoxini from long-dead bacteria which is released during cell-replacement programmes. It is not present in the morning, but comes on during the day. I guess there are vast host-cell replacement programmes after the germ is killed: it has, after all, completely altered the dynamic of host cell existence and a great many useless cells have to be removed. I lost 14 kilos in a few weeks after the second go of metronidazolei.


 

Does anyone else experience labyrinthitis?

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]

Sarah- I love this picture, your wonderful defiant "this will show them" chin! Have you sent a copy of this to your neuroi

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

Yes, this seems to be very common for me.  The vertigo comes and goes, and the loss of balance is infrequent, but it was strong last year when I'd had a cardiovascular incident and more swelling throughout my body.  
CAPi 2/14/06 for Cpni-CFSi/FM/CD
Hello Jim  -  No, but I should do, shouldn't I?.......SarahWink
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.

Well, if he has on record that you couldn't do this before, by all means. Anyway, you could tell him that it's a medical record which should be in your file: the results of your "Stork Test" which is a new neurological test for MSi. It might send him to the hospital Librarian to see what journal articles he has missed on it. Wouldn't that be a hoot!

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

Hello everybody, I come from the Czech Republic and it seems to me impossible to find here any physician who will be willing to go through this protocol with me or prescribe me such antibioticsi. Special question for Sarah: Don´t you or your husband have contacts through Europe on other research group, who are interesting in it and can give me any  advice? I have been treated with ofloxacin for five week but that is all. I had big endotoxini reaction, so I know this is the right way. I still have high antichlamydial titers but most doctors know nothing about chlamydia, in better case they were learned to prescribe antibiotic for two weeks. Thank your for soever informatin.

 

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

Hello Russ... This may be to late to reply to the question.. I have been sick for 13 years with cfidsi. was also told last year had chronic candida and cpni.. I was on the treatment for 8 months and saw NO change at all ... I am stopping as soon as I use up the pills I have on purchased...Good luck to everyone else..Nothing in life is perfect and on the other hand there is the majority that do get better... To have confidence in oneself..ohh how much different my life might be
To have confidence in oneself..ohh how much different my life might be
Hello Lala and welcome to the site.  There is someone else posting here from the Czech Republic, who is experiencing the same troubles as you.  Have a look at the following link: 
You can get advice by writing to David at the email given at the bottom of his first page, but we don't know anyone in Europe outside of this country who is actively treating for CPn infection.  You can perhaps persuade your family doctor to treat you, using advice from David.  Otherwise, you can order the abxi from the Canadian pharmacy whose address is given in the above link.  They will send to all EC countries and are very reliable Send me a private message or email if you would like any more information.  Very best of luck.........Sarah
(Damn it, I can't get rid of this purple text!)
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.

MnMs- It's important to have your report here of lack of treatment response, as well as the positive results or middling results. Could you tell us a bit more so we have the full picture: which meds, how many flagyli pulses, no reactions at all?  

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

Hello Sarah and  everybody,

many many thanks for this support. I think it will us help, very very much. Man must break the ice!

Jan

On CAPs:12/01/2005 till March 2013; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertension">i... 

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