9 Months In
9 Months In
Just completed 4 day flagyli pulse which means I'll be up to full 5 days at the end of Sept. My biggest symptom so far has been fatigue which usually lessens as I get further into the pulse. It's almost as if in the next 25 or so days the body forgets about flagyl and then boom when its introduced again major fatigue sets in...I'm about 6 months into a gluten and dairy free diet. Starting to incorporate the Dr Wahl diet. As long as I'm bombarding this critter (CPNi) with antibiotics I might as well starve it at the same time. So my current intake is 200mg Doxyi/day 250mg Azithromycin/Mon Wed and Fri and 1250mg/day of Flagyl last 5 days in the month. So when the pulse coincides with a Mon Wed or Fri I'm takeing as much as 1750mg each day of 3 different antibiotics. Hard to wrap my head around that! At this point I'm planning on ending this May or June next year which will mean 18 months on the protocol. Does that seem reasonable? One more thing you might find interesting...As long as I'm taking all these drugs a few more won't hurt so I've been taking 25mg/day of sildenafil. The theory here is that as long as there is a cardio-vascular element to this disease and still not feeling comfortable with CCSVI I might as well find ways to increase the blood flow and also with the help of baby aspirin niacin and a myriad of other supplements as per this sites suggestions. BTW my blue feet syndrome is dramatically less. Well nuf said for now. Hopefully I'll still be around at Christmas to let you know how 1 year on this protocol has treated me. Oh one more thing. My thanxs to Sarah and some others. Your responses are encouraging and very much appreciated.
-
SarahLonglands
- Family Elder
- Posts: 2209
- Joined: Thu Jun 17, 2004 2:00 pm
- Location: Bedfordshire UK
- Contact:
Re: 9 Months In
You should not stop until any reactions have finished. With me it was somewhat less than a year before I started intermittent, but other people seem to need much longer. I'm not sure if I needed to do the intermittent phase, but better safe than sorry. I was glad to finish altogether, though. I am saying this from a standpoint of not having had any MS episodes for ten years now, so tread carefully.
Sarah
Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
Re: 9 Months In
You lost me Sarah....Are you suggesting extending the pulse beyond 5 days?
-
SarahLonglands
- Family Elder
- Posts: 2209
- Joined: Thu Jun 17, 2004 2:00 pm
- Location: Bedfordshire UK
- Contact:
Re: 9 Months In
No! I was talking about when you are planning to finish the protocol. I never did more than a five day pulse. Some masochists do much longer. Their choice!! Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
Re: 9 Months In
Okay...What is the intermittent phase (just flaygl) and how long where you on it?
-
SarahLonglands
- Family Elder
- Posts: 2209
- Joined: Thu Jun 17, 2004 2:00 pm
- Location: Bedfordshire UK
- Contact:
Re: 9 Months In
Right, both of the bacteristatics for two weeks, at first after a month and then every two and then three months, adding metronidazole or tinidazole for the last five days. I carried on until I had been on the protocol for about four years. However, David stopped everything after 18 months and has had nothing coming back: maybe I could have done the same, I don't know. Better to be safe than sorry, I guess. I rarely took metro or tini for the full five days, though!
Sarah
Sarah
Last edited by SarahLonglands on Sat Oct 05, 2013 8:46 am, edited 1 time in total.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
Re: 9 Months In
Hi Sarah
Again you've lost me. It's taken me almost 1yr to reach the full 5 day flagyl pulse. I thought I would maintain that till the spring and then resort to
an intermittent stage. According to Dr Wheldon's recommendation this intermittent schedule should involve all three antibiotics over 15 days rather than
the whole month for a further 6 months. My disease path has been different insomuch that it is not characteristic of relapsing and remitting or having
any noticeable incident other than the ups and downs of fatigue. Since 1986 its been a slow degeneration that has put me somewhere on the EDSS scale
of 6-7. So for me its hard to monitor disease activity which makes it difficult to decide when to back off the full regime. I figure after 18 months if its still
there then its probably not going to leave under any circumstances. Anyway if your suggesting something other for intermittancy perhaps you'd be so kind as
to laymen language it...
Again you've lost me. It's taken me almost 1yr to reach the full 5 day flagyl pulse. I thought I would maintain that till the spring and then resort to
an intermittent stage. According to Dr Wheldon's recommendation this intermittent schedule should involve all three antibiotics over 15 days rather than
the whole month for a further 6 months. My disease path has been different insomuch that it is not characteristic of relapsing and remitting or having
any noticeable incident other than the ups and downs of fatigue. Since 1986 its been a slow degeneration that has put me somewhere on the EDSS scale
of 6-7. So for me its hard to monitor disease activity which makes it difficult to decide when to back off the full regime. I figure after 18 months if its still
there then its probably not going to leave under any circumstances. Anyway if your suggesting something other for intermittancy perhaps you'd be so kind as
to laymen language it...
-
SarahLonglands
- Family Elder
- Posts: 2209
- Joined: Thu Jun 17, 2004 2:00 pm
- Location: Bedfordshire UK
- Contact:
Re: 9 Months In
Lost you again? Right, I started intermittent after about a year. Roughly two weeks on the protocol, which included metronidazole for five days, then two months taking nothing but when you first start this you might feel the need to make the abx free period shorter. If this goes well, you can gradually lengthen the time without antibiotics: eventually I was doing two weeks on and six months off. Then I stopped completely. This was four years after starting abx.
It sounds as though you had progressive disease like me. I had a few relapses but by and large just worsening.
It sounds as though you had progressive disease like me. I had a few relapses but by and large just worsening.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
Re: 9 Months In
hey after your done with this, get a fecal matter transplant from a good source perferrably from someone who hasn't taken anti biotics. This way you won't be messed up for life
-
SarahLonglands
- Family Elder
- Posts: 2209
- Joined: Thu Jun 17, 2004 2:00 pm
- Location: Bedfordshire UK
- Contact:
Re: 9 Months In
Oh, so Ryan and I are messed up for life, are we? Strange, I don't feel messed up myself, in fact, I am doimg pretty well: no relapses or progression of the disease and ability to work all day!
Sarah
Sarah
Last edited by SarahLonglands on Tue Mar 04, 2014 11:20 am, edited 1 time in total.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
Re: 9 Months In
no silly i mean after you take long stints of antibiotics your gut flora can be seriously messed up. It might be smart to get an fmt after you take antibiotics.
-
SarahLonglands
- Family Elder
- Posts: 2209
- Joined: Thu Jun 17, 2004 2:00 pm
- Location: Bedfordshire UK
- Contact:
Re: 9 Months In
Silly am I? I took probiotics every day, farapart from the abx, my gut flora is fine!
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.