when does CAP treatment end?

Submitted by padeyas on Sat, 2008-04-05 06:47

  my questions to all you Cpn veterans.  is it safe to say that if you were to test your Cpn antibiodies they'd be below reference, thus, negative, right? 

assumming the patient is feeling good (after 2 years on CAP) and with no improvement seen over the last 6 months (hit roadblock).  their improvments are noted as >75% improvments.  ok, i guess my question is when does one stop taking CAP?  i could be wrong, but the marker doesnt seem to be blood test driven, so i am assumming it subjectively up to who he/she is feeling.  are there any or a lot of >2 years CAP'ers that will be ceasing soon?

do many people come on here after life on CAP?  regardless of good, bad, a relapse, or 50% improvement after years of treatment, i'd love to hear what they say.  i'd love to hear from those patients (the patients off abx)...  do they wean off the abx?  is it essential to continue with natural regimen of anti microbials after abx?  i'd love to hear any thoughts on life after CAP, how far away they are, and how they are gonna approach it...

well, you know youre tired with you see letters on top of each other..  =-)  i better sleep, but look forward to some informative post tomorrow.. 

Keith

Very good question. I wanted to raise the same! I am not a Veteran here on the site, not even expert,but experienced a lot on my own. Antibody test means absolutely nothing to me! I am negative for 5 months now and i still have die-off effects of medicines (this was also described here earlier). Someone correct me if i am wrong....
doxy200, azith250, NAC 2400, Metro 1250(once a month), supplements, vitamins.

your not having anymore reactions to the flagyl pulses or rifampin?  

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpn, myco, EBV, CMV. NAC 4000mg, doxy 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyl, tini<

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

Keith - Good questions.

I believe after Sarah quit having reactions to the Flagyl pulses a little over a year into treatment, she and David made the decision to move to intermittent antibiotic therapy to make sure the disease was really gone.  She describes this in her blog and posts.  Not sure how many years she did the intermittent - 2 maybe.  Last year she discontinued all antibiotics and still feels great.

There are others here that have also discontinued antibiotics and are still feeling great.  Some of them come back to post from time to time - some seem to fade off into the sunset and life again.

There are also those still on antibiotics and taking Flagyl pulses several years out because they still react to the Flagyl pulses.  Katman and MSWillow are examples of bloggers  who have been on CAP for 3 years and still aren't done yet.  Katman improved greatly a while ago but still feels she has a way to go and MSWillow is just recently making improvement.  Think they both have incredible tenacity and courage.

Believe that Stratton patent advises that it may take 3 to 5 years of therapy either full time or full and intermittment to fully eradicate CPN from your body.

Part of it seems to be how agressively you can tolerate going after the bacteria and still working/caring for yourself and children.  That effects rate of progress too.

It seems you can always tell when routine posters/bloggers here get significantly better - they start posting less and then less and then even less because they are living again.  I won't name names but I am really happy for them. 

 

Daisy - Husband on CAP 5/07.   Roxy, Diflucan round three 4-3, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Mino

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

delete double post

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

  This is just my experience with progressive MS: I took abx full-time for a year, then swapped to intermittent treatment, first of all two weeks on, two months off, the three months off.  I finished after not quite four years but now, nine months further on, I have experienced no return of symptoms and am still getting improvements, bit by bit.  I still have some way to go to be freed of various MS things, but since these are not due to ongoing infection but old demyelinaton, I am just continuing with all the supplements which now include fucoidan, to encourage my own stem cells to make the cells, oligodendrocytes, which then work on remyelination.  I also take tonnes of B12, vit D and NAC, of course, to discourage reinfection............Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

If you relied on testing, most of us never would have STARTED antibiotics. No, testing will not answer your question. Since patients of the big names in this field are being told to think in terms of up to five years, since the antibiotics are helping even when you're not subjectively observing any changes, we probably ought not to be in a hurry to move to intermittent therapy. Veterans can tell you they notice when their bodies start to pick up the slack and do the job that antibiotics had to do for them. Some of us have noticed when we get a rare cold now, it's milder and ends sooner. The supposition is that our bodies are taking over and our immune systems are doing the job now. Perhaps if you have had baseline tests for immune system function, which a couple of people here have, you could chart your system's functionality that way. Mostly it's an assessment of whether you're having any reactions to treatment or pulses, whether changing up your meds farther along in treatment produces any changes and how you feel, both physically and mentally, about moving on to intermittent therapy. If you have a knowledgeable doctor, great, but many here are walking their doctor through this tunnel for the first time and the doctor won't know, either. The informal rule of thumb we've told people is one year of abx for every ten years you've been cpn infected, but I know two people who went to intermittent sooner than that and are doing fine. I figure, with forty years of infection, that I'm going to add in rifampicin soon and do a few months of it before I'm satisfied I'm having no reactions to treatment. That will put me right at the three-year mark of abx (when I said I'd give this a year to work - hah! at a year, I still knew the abx were helping many aspects of my health).

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 think a good question to ask yourself.. just because you dont feel any die off reactions, does this mean that you are not still killing CPN?

does the 1 year for antibiotics therapy for every 10 years of infection, begin once you are tolerating the full protocol, nac, doxy, azith and flagyl?  

 

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpn, myco, EBV, CMV. NAC 4000mg, doxy 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyl, tini<

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

I think that's it, Sharon. I was set to back off and start intermittent therapy last year when I noticed something happening that made me think abx was still doing good for me, though I wasn't aware of it. I wrote about it elsewhere, so suffice it to say a pea-sized lump under my skin was suddenly diminishing. Now, if that's happening without my taking any notice, what else is happening, in my bone marrow, my organs, whatever? So, I decided to continue with abx a while longer. I am less afraid of being on abx longer, than I am afraid of quitting too soon. And with no one objective close by on a daily basis, I have to make this decision for myself.

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

Well, since I must have been infected since before I was 24 but was 45 when I started treatment, I think that I only followed MacK's rule of thumb if you include intermittent treatment in that.  I know that I felt no degeneration in the two or three months I was taking nothing.  I also felt no reactions to any abx, eve rifampicin, before the first year was up, but maybe the infection was just lurking in my brain, since I had nothing else wrong anywhere else............Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Yes, MacK, the same kind of thing happened to me last fall when I sailed thrugh a 25 day pulse. I could not have imagined such a thing even months before and then right after surgery did a regular pulse. It took 49 days to recover and now I have done another and finished nine days ago and here I am, slow and tottery. However, that is miles and miles ahead of three very long years ago.

 

Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 50 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I think it's a good rule of thumb that when you cease having reactions to the Wheldon CAP antibiotics and pulses, and can add Rifampin to this and not have reactions (and may want to add amoxicillan to this to clear as much EB as possible), then any remaining stuff should be taken care of by intermittent therapy for the next year.

We are probably about approaching that for some people on this site, but most of the folks who have cleared treatment have done so before Cpnhelp was created, i.e. were treated by Dr. Stratton and a few others. Some people may go on maintenance of some kind of periodic treatment, depending on their individual case. 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 250mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Keith, thanks for asking this question I am enjoying following along with the answers too.

Louise

CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Well, Sarah's weighed in. How about Astrodiana and LifeontheIce? Who else is still posting here who's completed full time abx?

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