Support for ThisisMS
Support for ThisisMS.
Sometimes I loathe the time zone difference because so much was happening while I was fast asleep. I was planning on a full day's painting today, but...................... ThisisMS is an entirely unaligned site started by a group of people in California who either have MS or have someone close to them with the disease. Before my diagnosis of very aggressive SPMSi and my equally rapid start on antibioticsi, I had never posted on a forum at all. When I started to improve I thought I should start doing so as a way of showing people that there might be a way out of this infernal disease. At first I found a half-baked English site where I was much criticized and eventually completely gave up on. After that I found ThisisMS which was still in its infancy. It is completely independent and basically allows anyone to say what they like as long as they are not hurting anyone else. This is unlike many other sites, such as the Marshall Protocol site, where you are banned if you don't toe the line, and various Lyme boards and CFSi/FMSi boards where people spend their lives stopping and starting and swapping antibiotics and basically getting nowhere. It is certainly unlike the British MS society site, where you can get removed as soon as you mention CPni or LDNi or anything else outlandish. If Arron has received complaints from other members of ThisisMS, which he certainly has, he has to act upon them. He hasn't banned anyone talking about antibiotics, just asks people to moderate their enthusiasm. There are many sites where you aren't even allowed to give links to other sites, but it is easy enough just to type in the name of this site as, say, cpnhelp(dot)org and leave it to peoples intelligence to copy and paste it and alter it as required. I do this with my email address on my own website to cut down on spam. He only started the Regimens forum and later the Antibiotics forum after my arrival. How many other sites have this? There are several people who post on ThisisMS who are following an antibiotic regime but never post here. There are also people who write to me from both sites who never post here. If I was starting now, I would somehow like to be one of those people. If everyone just stops posting on ThisisMS these people might well just feel that the regime isn't working after all. If you rely on just sending everyone over here, they now might well just get scared off by all the talk of the nine circles of hell from certain chronic fatigue people and the fact that every adverse reaction is put down to secondary porphyriai by other people. Marie (Rhodes) and Jim have done an awful lot of work for this site, whilst both suffering themselves: I wouldn't like it to become either just another chronic fatigue whine-fest or a place for what will be considered by most people, loopy ideas. So all you people with MS, I want you to continue posting on both sites. It is possible: I have never been chastised by Arron, although Jim probably squirms at some of the things I say here.Sarah
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Amen.
On CAPi's protocol for Cpni in CFSi/FMSi since December 2004.
Currently: 150mg INHi, Doxyi/Zithi, Tinii pulses
"I really didn't say everything I said." Yogi Berra
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
Totally agreed.
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
Sometimes it is a very good thing to "toe the line". To me it has been a saving place and an honor to post on both these unique sites. Certainly the people who have the difficult job of policing them deserve our cooperation.
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.
Sarah- You are correct. My statement was definitely ambiguous.
On CAPi's protocol for Cpni in CFSi/FMSi since December 2004.
Currently: 150mg INHi, Doxyi/Zithi, Tinii pulses
"I really didn't say everything I said." Yogi Berra
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
Hi Sarah,
I'm 53 yr old female, SPMSi 16 yrs, on Copaxone daily inj., paxil, zanaflex(spasticity), exelon(cognitive), walker and w/c.
Im interested in this treatment. Im sure my neuroi wont be. Are these meds oral or injections? Is there somewhere in thi
s site where it explains the drug treatmrnt? Are their specialists or do I have to go to my family dr. who is big on holistics
Is the cost $300.00 all out-of-pocket?
Thanks I live in California
Ginny
Hi Ginny
Sarah may be fast asleep at the moment. She will be along shortly. I hope you don't mind my jumping in here to welcome you. It sounds like you are MSi and about where I was a year ago. Look at David Wheldoni's site (Sarah is his wife). It is clearly explained and any questions you have will receive an enthusiastic, knowledgeable answer. The supplementsi list is there, also - a most important part of this.
You are probably correct about your neuroi, but any MD who will write the scrips is a welcome partner
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.
Hi Ginny, I'm an MSi care advocate and caregiver for my husband who will be starting the protocol very soon. We have found the Cpni Handbook on this site to be very informative as well as Dr. Wheldon's website. Just click on the "Cpn Handbook" tab at the top of the page. Best wishes, cypriane~~~~~"Enter through the narrow gate.....small is the gate and narrow the road that leads to life, and only a few find it." Matthew 7:13-14
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Hi Ginny, Like Cypriane I'm a carer and communicator for my daughter (26) who has just started the Abxi, she is at the RRMSi stage but has just suffered a major disabling attack which we hope has now come to an end. Others who live in the states will be in a better situation to advise about the costs etc, but for my part I have undertaken to chronical my daughter's progress, reactions and difficulties and pass on any relevant information to whoever is willing to listen.
Most of the information you will find on this site is helpful, Patient's Stories give you an idea of what to expect; its great to feel that you are not on your own with this, and that any queries you might have are likely to be answere by those who have been there before us.
Michele
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
"Sarah is fast"
was one of the first things I saw when I came to look at something David had posted. "Crumbs, what am I supposed to have done now," I thought, since "fast" can mean several different things.
But yes Ginny, I was fast asleep when Rica replied, so I forgive her.Well I didn't know Sarah was fast, I thought her a rather modest English rose myself. Welcome on board and I hope you are a person who successfully knocks out this bug. I ma SPMSi and 7 months along with the protocols here. I have some improvemnts already, but do nto walk well yet all of the time though I've had some good days. Read the blog entries also if you like that kind of thing. WHne I came across t his I was fascinated and compelled night and day to read all I could. Idid that for about 2-3 months before I got all started up.
In California you can see Dr Powell in Sacramento. He's a rheumatologist, but uses abxi regularly. I think he'll take an MS er..
Marie
Duly noted, Sarah. I'm one of the guilty parties; once I started to feel so much better, I began to limit my little bit of internet time to cpnhelp and I rarely visit ThisIsMS these days. I'm sure it's partly due to the occasional antagonism and debates, as it's so much easier to be here, where everyone is pretty like-minded about cpn infection.
For those who don't know, I am one of the people who was not only chastised for my (admittedly near evangelical) enthusiasm over there, but also bombarded by non-believers, who think all sorts of other off-the-wall remedies will cure their MS (including eating dirt - go figure).
Now, I have more strength of character than that and should expend the effort to continue to post there, but I admit I've been opting for the easy road instead of the correct one. And I do agree it's important for us to be there, showing we have found a way out of the great black hole of MS. There's a certain satisfaction in being able to tell people I was there, where you are, only two years ago, and I am fine and you could be, too. How will they ever know, unless we tell them?!
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
I am one of those who started posting on This Is MSi in the antibiotic section at the end of August. I can tell you that it is extremely comforting to receive advice from those who have already been down the antibiotic road. It is very much appreciated when someone responds to a question regarding this therapy. So much of it is relying on what others have experienced (there certainly isn't any information, or at least not very much, from the medical community). So please, as one who benefits from others' experiences, continue to post on that site. It is one of the best ways to get the information to others suffering from this. And I promise when I have a track record with this I will "mentor" others just starting out!
Lori
Started Vanderbilt protocol 1/9/08 Rifampin twice a day, azithromycin MWF, Tindamax for 7 days out of a month at 250 mg three times a day, b12 injection monthly NACi daily, DHA, calcium pyruvate, prilosec, low dose naltrexone 4.5 mg
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.
Ok I will give it a go as well, but somehow this site feels more comfortable and homely, so I might not be as assiduous as I am here.
Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
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 Mack, This is just a confusion between English-english and American-english. In this country (UK), homely means familiar and comfortable not unattractive, so Jim needn't lose his cool, it's really complimentary.
Robert - MSi for 16yrs. Supps & NACi 1200mg since Jul 07, Doxyi 100mg mid Aug, started Azith 250 mg MWF.
MSi for 18yrs. CAPi since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli for 4yrs.
(<There is nothing wrong with my command of English, it is my command of American which is lacking.>)
But the message is the same really, the Thisisms site is more difficult to navigate than this one, added to that there are so many categories and the writing is so small.... Jim has nothing to worry about...
Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
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
While I really don't feel qualified to do so, Sarah, I'll try to help out wherever and whenever I can. It's back to my University studies, tomorrow, however.
"People coming out of the woodwork," is a phrase I use all the time while driving on narrow, urban streets. My daughters both laugh at me for it
It is certainly amazing how some of the old-timers on ThisIsMS are coming around, too.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USACrusaders for MSi wellness, you know who you are...
this is a fabulous thing you are doing by persisting on a site to help people in spite of themselves. You are swimming up stream, against the current, like a salmon going to spawn. By saying what you can about us on ThisisMS persistently you are helping others save their lives. It is a noble calling.
God Bless You all.
Ruth
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 250 mg M/W/Fday, 8-21-07 1st pulse 1 X 250 mg Metroi
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<
Sarah, I would be glad to help but I don't feel that I've been on the protocol long enough to be able to provide much in the way of input. However I would hope to be able to contribute more as time passes.
Robert - MSi for 16yrs. Supps & NACi 1200mg since Jul 07, Doxyi 100mg mid Aug, started Azith 250 mg MWF.
MSi for 18yrs. CAPi since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli for 4yrs.
I have to put in a good word for lyme doctors here because they are a group of people doing a sterling job in the face of persecution, prosecution and in some cases the loss of their jobs while their patients are facing abandonment once again after thinking they had been saved from uncaring and ignorant health professionals who have ignored their suffering for so long.
These doctors have to take the time to do the tests because if they rush into treating sick people with antibioticsi without proof that they are infected with intracellulari bugs then the persecutors will have even more ammunition to throw at them, with the result that we'll then have even fewer doctors willing to prescribe. If some desperate people want to start treatment without waiting for the tests then no-one here would blame them, knowing what we know now, and they'll get all the loving support they need at this site.....rightly so because there are precious few other places to get this sort of support.
Not all the lyme doctors think that lyme is the cause of everything but many think that bacteria are the cause of a great deal of ailments, along with viruses, mycoplasmas and now (my doc thinks) microfilarial worms! In the pea-soup of pathogens found in any particular patient I'd venture a guess that it's hard for anyone to say for certain that they don't have such-and-such a bacterium somewhere in their body that could be contributing to their illness, the tests for intracellular bacteria are woefully inadequate.....as I know to my cost. The first test I had for borrelia was the ELISA used by the NHS and it was negative, if I had known how useless that test is in chronic illness I would not have waited several more years before looking for a lyme doctor who knew the correct tests to do and then start prescribing antibiotics, by which time I'd become severely ill and very disabled. As lyme has been known about for longer than Cpn more doctors seem to be informed about it and more tests are available, I hope no-one will be put off seeing a lyme doc as in many places there isn't any other type of doctor to help.
Elinor ..... from England on CAPi, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
PS.......can you tell I'm on tini?
Day 4 .....and it's enough for now, after 'Sweet 16' this one's been a bugger, just shows it doesn't do to get cocky
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.