Time to stop Protocol???

Think it's time to stop the antibiotic protocol. It will be three years 2/4/2009. I seem to be at a stand still. Not much improvement but the progression of the symptoms has slowed and maybe even stopped. I had gained alot back in the summer of 2007 but it didn't stay very long-only a few months. Was hoping my visit to Dr. Sriram in August of last year would jump start things again but that isn't happening. So I will slowly wean myself off the antibioticsi and hopefully my MS won't come back with a vengence. I will check in to see how everyone else is doing and gather all the information that is always cropping up on the site. Any comments and suggestions are welcome. Not quite sure where to go from here. Linda

Comments

Linda, you saw Sriram as a

Linda, you saw Sriram as a patient, not as part of a trial, so my guess is that there has just been a bit of a mix-up with regards your prescription.  He only includes relapsing remitting people in trials: that's a commonplace everywhere.  As a standby, you could order some stuff online from here<.  Lots of people do.

As far as I know, unless they have recently changed, Vanderbilt don't use intermittent treatment: they keep you on full-time until they reckon you have finished.  David brought in intermittent treatment and it has worked well for far more people than just me.  I started by doing two weeks on every two months, then two weeks every three months then worked out from that.  After four years I finished and I am still getting gradual improvements now, a year and a half later. The thing is, you must change back from rifampicin to doxycycline on intermittent because it is very easy to build up resistance to rif................Sarah

An Itinerary in Light and Shadow

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.

Your probably right about

Your probably right about Dr. Sriram. I will wait til he gets back from vacation and see. I think I will stop everything for a month and then start the intermittent therapy. Did you have any recurring symptoms after you stopped the everyday antibioticsi? I mean between the intermittent pulses? Linda
If there is no wind..............row 12/26/2010 Presently not on any antibioticsi. Just supplementsi. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.

You might ask a few more

You might ask a few more pharmacists and read some of the articles posted here.  I would point you in the direction if I could but D3 is very inexpensive and it is available over the counter and the differences are.........   Might be worth considering the bio-identical form , in my humble opinion.  Louise
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Yes, Mary Ann - my walker

Yes, Mary Ann - my walker came months AFTER I began the protocol. I don't believe I hit bottom for at least a year, and I was on Doxyi, Azith, Rifampin and pulses (every three weeks). My disease was rampant. Rica

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

Linda, you are my

Linda, you are my mentor! I always look to see if you have posted and was so happy to see of your last post but somewhat shocked when I read the contents.  I am so sorry that your condition hasn't improved with the changes made to your protocal.  You have been such a positive person; this must be very disheartening for you.  As for me, I have regressed in my condition quite a bit (meaning my MSi has progressed); I have always thought this was happening and it is especially scary living alone, especially when I find myself on the floor and have such a hard time getting up.  As for now, bless you and bless us all!  

Mary Ann

SPMSi. Dxi 1991. EDSSi 6.0, 6.5, 6.9; Weldon CAPi. started 3/08.  All supps, NACi, Doxyi, Azrith, 13 flagy pulses, 5th tini pulse 11/13/09, 19 total pulses, no improvements, worsening condition 

Mary Ann, Remember, Rica's

Mary Ann, Remember, Rica's condition declined for many months before it turned around.

Declined, not just in a holding pattern.

The timing for turnaround is different for everyone. That's why I told Linda there's no harm in continuing and every chance it will be of benefit.

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

Red- I've created a new

Red- I've created a new forum container for "High Dose Vitamin Di" to give a place for this discussion. I found your post here very informative, as I find almost all of your posts on this site. Perhaps you can start the new forum off with a precis of your reasoning, process and findings, using your comment above as a framework. Perhaps we can encourage others who stopped posting about this to report in as well.

 

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

Linda, I would consider

Linda, I would consider changing things up as well. I have Rif on my list of things to try before stopping abxi. My doctor changes things up about every 3 months as soon as I have a month w/o herx he says it must be time to change things up.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

I totally agree,

I totally agree, Louise.   And I think much of the new openness here is due in no small part to the success found by Daisy and her husband and the rest of you who have altered the protocol slightly to help battle Lyme Disease.      I think we should be open to alternative therapies for these diseasesi if good, solid research supports them.  But I think we should also be careful to point out when an alternative therapy doesn't really treat all  forms of Cpni, and would then likely result in failure...

I'd also love to hear from those people who were (and maybe still are) on the high dose Vit D3 + NACi protocol or even other well thought out alternate therapies.  Unfortunately I've lost touch with the few who were privately encouraging to me.   I hope they are still doing well...

 

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

I am on Vitamin D2. I

I am on Vitamin D2. I asked the pharmacist what the difference between D2 and D3 is and he said virtually nothing. They both get to the right place in the body. Linda
If there is no wind..............row 12/26/2010 Presently not on any antibioticsi. Just supplementsi. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.

Red, I sure would like to

Red, I sure would like to hear more from those that are on the High Dose Vit D3.  I do think that the culture here has expanded some in the past 18 mos. and might well allow for more discussion. Thanks for keeping track of the topic and updating the science links regarding the topic.  When each of us finds something helpful to ourselves then we are bound to keep talking about it Smile Louise
  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Hi Linda,I couldn't agree

Hi Linda,

I couldn't agree more with Jim and Garcia's posts.    Other than now being absolutely certain that pathogens were, and to a greatly reduced extent still are, the underlying cause of my own ailments, god knows the total number of pathogens that were/are involved in my case.   

I've not bothered to do any testing for specific pathogens, and have never even done antibody testing for Cpni.   I did, however, react rather dramatically to NACi and antibioticsi in early treatment and experience large amounts of secondary porphyriai before and during treatment,  so I'm pretty certain Cpn was fairly heavily involved for me.  Were additional pathogens involved in my case?   I'm guessing so, in that I also had problems with seb derm and tinea infectionsi prior to CAPi.   I also reacted rather oddly to ivermectin when I used it for rosaceai, and I'm thinking it may have been killing of some other intestinal parasites or something...

Anyway, my die-off and secondary-porphyria reactions decreased to a point where the reactions were pretty much non-existent after about 18 months when CAP agents were used alone.  I then found that I again had rather dramatic response to higher and higher doses of Vit D3.   Since it elevates the production of our own broad spectrum antimicrobial peptides,  and these antimicrobial peptides have been shown to have activity against a host of bacteria, fungi and viruses, I believe that in additioin to Cpn, this helped me slay some additional pathogens.   It could have just been the Cpn, of course, but all those tinea and seb derm infections completely cleared up and have never returned...  

I tried adding Vit D with the antibiotics at first, but the secondary porphyria produced was too great for me personally.   Then I went back to just the antibiotics, but I felt nothing again.   I then decided to switch from the antibiotics to just high dose Vit D and NAC (figuring I could always go back on the antibiotics) and continued to feel die-off and secondary porphyria, although it was very manageable.    I also talked with Dr Stratton to discuss this alternate protocol with him, discussed the actions Vit D likely has against intracellulari forms of Cpn, calculated the risks of potential backsliding, resolved that I could watch for any signs of this and switch back to the antibiotics, and then proceded with the alternate protocol.     Importantly, I continued to feel improvement over a period of months (not days or weeks!) while on it so I never felt the need to switch back to pure CAP.  

I switched to the alternate protocol at a time when a few people who were on high dose Vit D + NAC (under one of the doctor's care actually) were sort of shunned on the board by some who were very CAP centric.   There were also people who were extremely upset by this doc recommending the alternate protocol to start with for them.    Unfortunately many of the people on this alternate protocol avoided posting directly on cpnhelp since they frankly felt so unwelcomed, but a few sent some personal messages in support of my trials, and most importantly they said they were getting better.      I've found the same thing...

I've since improved to a point where I'm able to add the antibiotics back in, and although I've always been nervous that I might find that I've backslided and the antibiotics would produce heavy die-off and secondary porphyria again for me, this has not happened.  I've actually found that they are not really doing anything additional for me again, but importantly, I can handle them (at least intermittently) with the high dose Vit D unlike before I went on the alternate protocol.

Based on my own experience, I would highly recommend what I've done to anyone who seems to plateau on CAP treatment.   If you don't have problems with secondary porphyria, I would hedge my bets and add the high dose D in with CAP as an addition.   If you do have problems with secondary porphyra from both CAP and Vit D3 as I did though, I would highly recommend thinking about dropping CAP, ramping up on the Vit D3 as quickly as you can (it did take me almost a year to be able to ramp to 10,000iu however), and then add CAP back in to complete your protocol.   It seems to have worked for me...

So, CAP, alternate CAP, additional agents.   Who really cares?  I feel better, and this is the important thing...     

I know I sound like a bit of a broken record on this subject, but have you thought about bumping up your Vit D intake to doses as high as 10,000iu a day while making sure your blood Vit D levels are at the high end of the 55-70ng/mL (or even higher potentially) range?  Perhaps doing this to see what happens before you give up on the antibiotics (meaning trying CAP + high dose D if you don't have too much of a problem with secondary porphyria)?   Perhaps this might help take you to the next level..

My own thoughts were, what do you have to lose by trying to add something else like high dose Vit D (in order to kill potentially additional pathogens)? 

I hope this might help in your decisions.   Most of all, I hope you are able to find something that helps restore your good health!

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

I am currently on 50000 IU

I am currently on 50000 IU of vitamin Di. Have been since September. Haven't noticed any difference since I've been taking it. Linda
If there is no wind..............row 12/26/2010 Presently not on any antibioticsi. Just supplementsi. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.

Are you taking the script

Are you taking the script version of once a week D2 or are you taking D3?  Ken

In pursuit of ABX<

Don't Allow What You Know To Get In The Way Of What Might Be

Linda, 50,000/day or

Linda, 50,000/day or 50,0000/wk? (I take 8,000 to 10,000iu per day, but in conjunction with abxi, not as an alternative to abxi)

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

50,000 a week (one pill)

50,000 a week (one pill)
If there is no wind..............row 12/26/2010 Presently not on any antibioticsi. Just supplementsi. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.

Thanks Michele, you are

Thanks Michele, you are always so spot on with sharing the exact location of needed information.  I was going to suggest that Linda seek this out since I had not memorized it personally yet.

Linda, I am personally between a rock and a hard place about needing to possibly go off treatment to allow for liver cell repair and regeneration.  I have been bucking this for more than a year now.  I have been in treatment 18 months. I do not want to stop, am concerned about back sliding and enjoying the level of improvement that I have at present. 

Relative improvement and that, when one considers where one is, from the perspective of where one was when one started the protocol, even if it is "just" the fact that progression of symptoms has ceasesm is still truely a gift to be appreciated in amazement, in the world of chronic degenerative diseasesi.  In the normal course of such disease treatment and progression, it may often be slowed a bit but if truely degenerative rarely truely improves for the most part.  Yes, there are miracles, and spontaneous healings, and waxing and waning of symptoms, but true reversal, IMHOi rare.

We all want more, we all want full recovery and better, at least in my heart of hearts I do. 

I like what MacKintosh has to offer, if these medications are not truely challenging your body (as it as been established that they seem to be in my case which is not the general response of most folk but some (this is not based on one test result but a series and a full screening for all other liver possibilities) and You have been two years on the program, IMHO by completely quiting you may be missing improvements or even back slide into progression.

There is a tediousness to all these pills that is for sure.  Just consider where you may have been by now without this treatment program for your chronic degenerative disease.   Louise

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

You might check with Siram

You might check with Siram on this, as he's your expert consultant and might have clearer criteria. You can't use Rifampin for intermittent protocol, so you might want to find out the combo he'd advise.

Halting progress is a big one in MSi, so that's improvement even if function hasn't returned. I am of a mind that there are subgroups within both MS and CFSi/ME where more than one factor combines with Cpni, so that pursuit of related infectionsi, vascular issues (I know there is some discussion of this in MS) and other factors need to be looked at if CAPi gains are limited or absent. This isn't a religion here, and we know too little about all this to make blanket assertions for any individual. Let us know how it goes and what you are advised by Siram.

 

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

I'd love to talk to Dr.

I'd love to talk to Dr. Sriram but I think for all intents and purposes he has dropped me as a patient. I e-mailed him to tell him I needed a prescription for the Rifampin because I was almost out of the previous prescription I had from another doctor and received an automatic response e-mail saying he was on vacation til January 15th but would be reading his e-mails and would have his nurse return e-mails and follow ups. I've e-mailed her twice and called twice and left messages on her voice mail but she has not got back to me. I'm sure that because I'm not showing a big reduction in symptoms and nothing spectacular that it probably isn't what his research is looking for. I knew when I went to see him that he really was hesitant to treat me. I didn't fit the parimeterers of his program. He is only treating Remitting Relapsing MS not Secondary Progressive MS. He told me as much. So now I have to find another physician to prescribe the antibioticsi for me so I can go to intermittent therapy once a month. Thanks for your comments. I'll keep everyone advised. Linda
If there is no wind..............row 12/26/2010 Presently not on any antibioticsi. Just supplementsi. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.

> I am of a mind that there

> I am of a mind that there are subgroups within both MSi and CFSi/ME where more than one factor combines with Cpni<

I'd go further than this and say that when it comes to something like CFS/ME the number of people with just a Cpn infection (and no other active infectionsi/issues) is likely to be small.

> This isn't a religion here, and we know too little about all this to make blanket assertions for any individual.

I'm glad you said that! There are too many people here who do treat it like a religion, parroting whatever those from on high may have said at some point without acknowledging our severe limits in understanding of this pathogen and its interaction with the host.

Hunter: Don't think - experiment

Here is an extract from

Here is an extract from David Wheldon<'s site explaining the intermittent protocol:

The eventual aim is to give all three agents intermittently so that there is some respite from antibioticsi. This, the final leg of treatment, may entail a 14 day course of doxycycline and roxithromycin, with a five day course of metronidazolei in the middle. This course is given once a month. After several months the intervals between the antibiotics may be cautiously extended. Rifampicin is not suitable for intermittent use, and azithromycin may be given instead.
 

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Here is something else to

Here is something else to consider:

http://www.hhv-6foundation.org/hhv6_ms.html<

I don't know if you have been tested for HHV-6, and I honestly don't know anyone undergoing HHV-6 treatment who has MS, but I know this is on their website, so I thought I would offer it as food for thought for you.

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

I'm not sure how to think

I'm not sure how to think about this, but I'm glad you asked the question and shared your thinking with us.  One thing I do wonder about are some of those "peak" days during the protocol, are you now as good as your best peak days?  Is this even a reasonable question to ask?  Ken

In pursuit of ABX<

Don't Allow What You Know To Get In The Way Of What Might Be

Yes, I guess I feel as good

Yes, I guess I feel as good as I'm gonna feel. No more surprises when I do the pulses. Linda
If there is no wind..............row 12/26/2010 Presently not on any antibioticsi. Just supplementsi. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.

Hi, Linda - All I can offer

Hi, Linda - All I can offer is my own experience with 'no reaction to pulses'.

I've been doing this since 06 October 2005.  Easily, a year ago, I really had no reaction to pulses.  Heck, I almost never did have any reaction to pulses except getting very cranky and short-tempered.

I would have laid off abxi by now, except for one little thing that probably isn't so little.  I don't see any improvement or changes anymore, except for this.  For many years (at least fifteen, since I remember talking to a plastic surgeon about this twelve years ago), I've had a dark, semi-solid lump under the skin on my left hip/thigh.  It started out like an angry mosquito bite, itched a lot, solidified a bit, then spread to at least half an inch in diameter.  The skin was stretched and the lump was reddish-purple.  Two doctors declared it non-cancerous and both called it an 'age-spot'.  It felt like a fatty pea under the skin.

 Sometime in the summer of 2007, I realized it was getting smaller.  I also realized it itched a little whenever I did a pulse.  And it got smaller.  Smaller still.  It got down to the size of a seed, like birdseed.  I started to squeeze it and knead it, thinking the hard little pustule needed to be massaged and broken up.  It's still there, but even smaller.  I've come to the conclusion it must have been a nasty little colony of cpni that's been hit by the antibiotics.

I've also come to the conclusion that, although I don't really feel any more improvements or have any reactions to pulses, something may still be happening that I'm not aware of.  For this reason, I'm still on abxi.  It isn't hurting me to stay on the meds and it might well be helping, so I'm hanging on a while longer. 

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

Linda, what makes you ask

Linda, what makes you ask the question?  Have you stopped having reactions to pulses?

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Yes-pulsing doesn't bother

Yes-pulsing doesn't bother me other a little nausea. Linda
If there is no wind..............row 12/26/2010 Presently not on any antibioticsi. Just supplementsi. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.

I have had pulses in the

I have had pulses in the past that caused me nausea - die off reaction I think as it is helped with the Emergen C & other moppers.

I am glad you are in a position of intermittent.  I am on the "don't quit cold turkey just yet" crowd

blessings

r

 

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<

What good news!  I'm

What good news!  I'm rooting for you.  Smile

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Linda, if your standstill

Linda, if your standstill means that you think you have stopped progression, please don't just stop because new things may be just around the corner.   would say either carry on as you are or consider going onto intermittent treatment, changing rifampicin back to doxycycline.  I did three years of this after full-time before I stopped completely.  I know I was never stuck in a wheelchair or a bed, like you and I didn't know if this was necessary, but if the MSi had come back just because I stopped too soon  would have looked silly................Sarah

An Itinerary in Light and Shadow

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.

So how should I do the

So how should I do the intermittent therapy? Don't see any reason to keep taking the antibioticsi daily where I've been at a stand still for almost a year and a half. Afraid to stop totally. Afraid the MSi will raise it's ugly head again. Linda
If there is no wind..............row 12/26/2010 Presently not on any antibioticsi. Just supplementsi. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.