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Re: Antibiotics for treating ms in Australia -- New Member

Posted: Mon Oct 15, 2012 6:31 am
by SarahLonglands
Well, I don't think that anybody who started the treatment that long ago was actually in a wheelchair, so I can't answer that! It all depends on where the worst damage in the cns is: I had very little spinal damage so I was able to recover more easily. Tricia's responses look promising though, but you will have to be patient: to start with, the third antibiotic causes most people a temporary setback, which tends to be worse the earlier it is started. This is what causes most people to stop the treatment, thinking that they are having a relapse: it's not an easy thing to do and I think you are both very brave.

Sarah

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Tue Oct 16, 2012 9:51 am
by MHP
Dear jimmy6
thank you so much for sharing your info. I am in the process too of talking to my GP and following Dr Wheldon treatment. As you mentioned there are not many people sharing how the treatment is doing for them that is why people like you are so valuable. I am intending to also share my experience and I have the conviction that Dr Wheldon findings are in the right path!
take care and keep us updated.
MHP

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Tue Oct 16, 2012 10:21 am
by SarahLonglands
It is a great shame that so few people post here anymore but rather prefer the much more active site of CPn Help. You might try to look there because there are many new people there now, both MS people and people who suffer from other diseases caused by C pn.

Sarah

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Wed Oct 17, 2012 1:25 am
by CureOrBust
Anecdote wrote:It is a great shame that so few people post here anymore but rather prefer the much more active site of CPn Help. You might try to look there ....
Do you think it maybe because they are being directed there? :razz:

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Wed Oct 17, 2012 6:12 am
by SarahLonglands
Of course they are, Cheeky. There is a big link put on the Catalyst transcript by Maryanne for starters and if someone asks me here if anyone apart from me is improving, I have to direct them there................Sarah

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Thu Oct 18, 2012 11:15 pm
by jimmy6
Anecdote wrote:Well, I don't think that anybody who started the treatment that long ago was actually in a wheelchair, so I can't answer that! It all depends on where the worst damage in the cns is: I had very little spinal damage so I was able to recover more easily. Tricia's responses look promising though, but you will have to be patient: to start with, the third antibiotic causes most people a temporary setback, which tends to be worse the earlier it is started. This is what causes most people to stop the treatment, thinking that they are having a relapse: it's not an easy thing to do and I think you are both very brave.

Sarah
Hi Sarah thank you for the answer to my e-mail. Mick here and i have a small problem. Tricia has a super pubic catheter and its keeps getting blocked and the urine sample that showed that there was a infection and the doctor has recommended Amoxil 500mg 3 times daily 7 days and he says that it is compatible with the treatment she is taking. I dont know about that because Tricia has never been better and this catheter has been blocking for the past 45 days . Could what they picked up was really dead cells from the treatment that she is taking already. I dont want to bugger up all the good work. That would be almost 2000mg of antibiotics per day for 7 days. Any suggestions Mick.

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Fri Oct 19, 2012 5:44 am
by SarahLonglands
Hi Mick, you really need you keep the doctor on your side so I should go along with the amoxicillin since it is just for seven days. It is compatible with the treatment and used to be used before NAC. Some people take it even now, even if they are taking NAC. It is often used for urine infections and they can often be silent.

Hello to Trish!!

Sarah

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Fri Oct 19, 2012 7:31 pm
by CureOrBust
Anecdote wrote:Of course they are, Cheeky. There is a big link put on the Catalyst transcript by Maryanne for starters and if someone asks me here if anyone apart from me is improvin, I have to direct them there................Sarah
Actually, out of interest, does that "other" website have similar restrictions onto linking here, that here has with it.... B-(

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Fri Oct 19, 2012 10:58 pm
by NHE
CureOrBust wrote:Actually, out of interest, does that "other" website have similar restrictions onto linking here, that here has with it.... B-(
Here's historical perspective on why that restriction was put in place by Arron in 2006.
http://www.thisisms.com/forum/general-d ... tml#p14518


NHE

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Sat Oct 20, 2012 7:31 am
by SarahLonglands
Hi NHE, The website that Arron was referring to was definitely not CPn Help: I could hazard a guess as to which it was but I won't. Arron changed the given address of CPn Help after complaints by such people as Bromley and others but all the links to it used to work, but now they don't. The site can be found with a bit of manual dexterity: http://www(DOT)cpn(NOSPACE)help.org I think the whole thing is very childish and not a bit like the Arron who wrote to me in 2005 as follows:

Sarah-- outstanding news! So happy to hear things are going OK, both in how you feel as well as on the MRIs. That is remarkable.

I have to be the damper here-- Sarah is one person-- so in order to get a trend, MANY of you need to go and get better! How you do it is up to you and your doctor, of course, but certainly Sarah and Dr. Wheldon's willingness to share should help your GP/neuro decide if Antibiotics are a worthwhile experiment in your case. Compiling a list of people who have taken the therapy AND have objective before/after MRIs would be a critical step in building a strong *clinical* case for antibiotics and MS.

Ok, I'm done with my disclaimer.

So happy for you Sarah!
-a

Unlike other sites, such as MS society sites, I thought that ThisisMS was about looking for ways of getting better rather than just living with a disease. All these years I must have been wrong.

Sarah

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Sat Oct 20, 2012 12:31 pm
by MacKintosh
CureOrBust - If you're talking about cpn help, no, we do not limit links back here. We refer to TIMS a lot over there and many of us are unbelievably grateful for ThisIsMS. We learned about the antibiotic protocol here, we connected with Sarah and her amazing doctor husband, David Wheldon, here, and we charted our travails and recoveries here.

No, there is NO problem with linking back to ThisIsMS from the cpn help website, nor will there ever be! We're huge fans of TIMS.

(Sorry to be off-topic, everyone, but what happened to Aaron? Gone?)

p.s. Fr the newbies, I'm one of the antibiotics success stories. I estimate about 95-98% recovery from all manner of bizarre MS synptoms. :-D

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Sat Oct 20, 2012 6:37 pm
by jimmy6
Anecdote wrote:Hi Mick, you really need you keep the doctor on your side so I should go along with the amoxicillin since it is just for seven days. It is compatible with the treatment and used to be used before NAC. Some people take it even now, even if they are taking NAC. It is often used for urine infections and they can often be silent.

Hello to Trish!!

Sarah
Hi Sarah thank you for your advice. It made me feel a lot better when i turned on the computer and found your e-mail . I must admit that i was worried about upsetting the treatment. All is well and i will stay in touch. Mick & Tricia.

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Sat Oct 20, 2012 11:49 pm
by NHE

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Sun Oct 21, 2012 7:12 am
by SarahLonglands
NHE, I have seen most of these before, but none of them say why a link to CPn Help doesn't work anymore. They did when Arron was the chief moderator.

Sarah

Re: Antibiotics for treating ms in Australia -- New Member

Posted: Sun Oct 21, 2012 7:55 am
by euphoniaa
Anecdote wrote:NHE, I have seen most of these before, but none of them say why a link to CPn Help doesn't work anymore. They did when Arron was the chief moderator.

Sarah
Sarah, the link in your post above takes me right to the site. :confused: