27 Apr 2018
Author
Ellehcim
Title

CPn testimonials not encouraging?

Body

I have been diagnosed with Mycoplasmas and HHV6 after being sick for 24 years.  My doctor started me on one of the protocols with reference to this site.  We were going to start with killing the Myoplamsas and then move on to the the HHV6 at some point.  At first I was excited. I did well with the NAC and Azithromycin.  When we added the Rifmpin I thought I was going to die.  I have read all through this site and others and get the endotoxin theory.  But when I realized just how much the Rifampin depresses the immune system I stopped it.  My immune system is already suppressed.  I am sure m

Comments

Ellehcim,

This treatment is not for the faint hearted and Rifampin can be difficult to tolerate, we know however that it is effective against Cpn so a sizeable number of us do take it.  There is considerable die off happening at the beginning of treatment that can have a number of effects both physical and emotional.   You could talk to your doctor about reducing the dose to start with.   We often feel here that 'bad' reactions are good, in a perverse way it is proof that the treatment is working.   However, we are not in the business here of trying to convince someone of continuing to follow a course of treatment if their heart is not in it.

I'm not sure what testimonials you are talking about, the blogs you might be refering to are an expression of people's condition who are in the most part in the early part of a treatment that can take many months, in the same way as Tuberculosis requires years of treatment. The eradication of Cpn is not going to happen overnight.   This site is only just coming up to its 3rd birthday and the initiators of this protocol have suggested that the length of treatment should be 3 to 5 years.   A couple of years down the line I have made significant progress but I have a way to go yet.   There are a number of people who have made good recovery and considering the small number of people who are in treatment that is a good indicator of the effectiveness of this treatment.   I suggest you read the patients stories (tab at the top of the page).

Opinions are divided about the effect of Rifampin on the immune system as this article explains. Whatever you take to treat your conditions, there will always have to be a trade off of some kind, in the end it comes down to a personal decision weighing up the pros and the cons and deciding for themselves which way to go.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Ellehim- There is a big bias to reading the posts here that you have to take into account, as most people are posting needing support for various difficulties. The people with success, and there are many, post less frequently as they are busy living life, restored lives. That's why we post the patient stories. They are more complete stories and not just blow-by-blow requests for help.

You raise some important issues about how to go about treating viral and bacterial co-infections. You probably do have to choose one and get a "leg up" on that before startiing the other, since each treatment will generate some significant die-off before improvement. It's a doctors judgement for each patient as to which to do first. But I can tell you that you will bog down if you inadequately treat a bacterial infection, which the MP protocol clearly does in terms of it's inadequate dosing and lack of covering the necessary phases.

You should defintiely look at http://stuff.mit.edu/people/london/universe.htm before deciding. There are others here who have come here from the MP site who can give you a better assessment of that protocol, but I can tell you that anyone reporting negative results with the MP gets banned from posting there. So the impression you get from reading their forums is tightly controlled and therefore misleading. There are a lot of folks sicker from the MP you never, ever hear about. We don't limit post here which speak of lack of success in using a CAP, and in fact do very little screening except for spam and lack of relevance to the purpose of the site.

You have some incorrect information that is confusing the antibiotics with the effects of killing a highly toxic and inflammatory bacterium, and misperceiving the antibiotics as "toxic."  I'm not sure where you get the notion that Rifampin is immuno-suppressive. Actually, it has very little immunomodulation. Rifampin is, however, a very potent anti-chlamydial. I still can't handle it. For most of us it is not the one to start with as the endotoxin and secondary porphyria from it is much stronger given it's more potent bacterial kill. You are mistaking die-off with immunosuppression. 

There is a phenomena with Cpn relating to the immune system: Cpn infects bone marrow and immune cells. When you kill the Cpn, many of these cells (macrophages, neutrophils) may die leading to a short-term drop of these immune cells. But since new non-infected cells are produced rather rapidly, you actually strengthen your immune system in the long run by using the antibiotics, since you have less and less infected and thus low-functioning immune cells over time.

Well, I dont know about anybody else but its working for me. I would have killed myself had i have not started these antibiotics when i did. I guess it comes down to having patience, and understanding that its a long process. The benefit outweights the means for those who continue, and that is why they do so. I guess it depends on ones degree of suffering and what they are willing to do to escape it 

Also keep in mind there is a huge margin for testimonial error for so many reasons in a forum. We on cap are not in a controlled experiement  

 

 

 

     &nbs

We all want a sure fire, quick way to cure ourselves and this way of thinking is what trips up so many people when considering the CAP. There is NO easy way. There are so many inconsistencies in people's patterns because of many variables: How long have they been ill? What co-infections do they have?

My first year of treatment my white cell count was very low. It steadily kept rising over the time of treatment. I would attribute this to Cpn infecting the white cells and cell apoptosis with CAP.My doctor monitored this and by the end of the second year I was at the low end of normal. I did have flares of herpes simplex the first year. The second year I picked up a new infection with EBV that sent me back into purgatory.

Now at the end of my third year on CAP, I am 98% well and have normal energy. I am reacting very little to Flagyl pulses but still have my resident viruses hiding out. I would say my immune system has made a good recovery. I lost heat and light sensitivity and can go out in full summer sun for about 4 hours (with a hat and sunscreen of course). Three years ago the sun burned my skin like a vampire! I could not tolerate it.Now it just feels good. When I began treatment my D levels were very,very low. Now they are normal thanks to the sun and supplemental D3. This has been a big factor in my muscle strength and athletic endurance. Here's a link to some info on that: http://www.vitamindcouncil.org/newsletter/2007-mar.shtml

If it had not been for Drs. Stratton, Wheldon and Powell, I would be on the road to disability, unemployment and an early death. I recently sent a donation to the new Cpn Lab at Vanderbilt as a small token of thanks. Believe me, when I was lying in bed, wishing I could just die I never knew that I would be well again. My prayers were answered and I will always be grateful!!!

But the road to wellness is hard and takes the ultimate level of commitment. I let nothing stand in my way to get my healthy body back from the invaders.

Raven

 

CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFS

Also EBV and HHV6

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

I don't know that we have any testimonials on this site, but if you are reading the forum posts for 'feel-good' responses, you're looking in the wrong place. You are, however, reaffirming my belief that many who come here are seeing only the 'negatives' of the protocol on the forums. People generally post on the forums when they need help getting over a tough patch in their treatment.

Jim is absolutely right that those of us who are SO much better do not post often about how well we feel and how easy the protocol is for us.

Let me correct that for you. After a dramatic downhill slide for my 'probable MS' in August of 2005, I started Dr. Wheldon's protocol on 06 October 2005. I had a pretty easy time of it and started both doxy and azith the same week. I did my first flagyl pulse six weeks later, the day after Thanksgiving. It, too, went fairly well.

Within two weeks of starting, my brain fog was lifting and my symptoms were stopping. Today, 34 months into treatment, I would say I'm 98% improved and I expect full recovery. Today, I spent my day pulling waist-high weeds and cutting branches and shrubs. I was overheated and overworked, in 86 degree temps and high humidity. I took a shower at 4pm, drove an hour to meet a friend, had a nice dinner out and we took in a movie. For most of my life, I was unable to muster that kind of energy. I'd say THAT's a testimonial.

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 who doesn't post often as I am living my life!  I have been doing this only since January '08 but I definitely can tell it is working for me.  I post when I have an update or a question.  But I read comments on this site every day and take suggestions when I see something that applies to me.  But I don't post that I do that.  This community is designed to help each other through the protocol.  It is not designed to tell all the success stories and "sell" a person on the treatment.  When I first considered doing this I researched it in many different ways before I came to the decision to proceed.

 

It is definitely not for the faint of heart or for someone who wants a quick fix.    It works for someone who is willing to take the good with the bad and who believes that  in the long run this is the way to go.

 

You need to read between the lines in some posts.  Someone may be experiencing  a new symptom or porphyria but have seen improvements in other ways.  This is an on-going process and I know I wouldn't be doing as well as I am without the ability to see how others are faring and to learn.  This is an extremely supportive community.

 

If you have questions specific to one person's journey you should send that person a private email and he/she will gladly answer your questions/concerns.  I have sent and received a number of pms just for this reason.  If you decide then that this isn't the right path for you then you will have made an educated choice.  But if it is something you decide to pursue you can rest assured that this group of people will be here to help in any way possible. 

Lori 

 Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin D 50,000 IU weekly

And here am I, at what should be a low time of my life: for the second time in eight months, I have had "major" surgery, the first for a bilateral mastectomy, the second to begin reconstruction - all fairly unpleasant. But I have no doubt that I should be either dead or in a wheelchair with "alzheimers" - sometimes another name for brain-fog. I am not yet 98% and may never be, but I walk UNAIDED, having given away my walker, and am very impressed that cpn bugs are found in cancer cells. It is thought by my surgeon that they "got it all" and I am in my fifth year of our protocol, working to eliminate the rest of the troubemakers from my body.

You see the problem here - we don't gloss over the bad parts. We all have LOTS of bad parts that we have to get through before the final chapter in our disease can be written. Not too many stay around that long - it's just too long, hard, and, at times, hopeless looking. But it is not hopeless if you take it a day at a time.

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

Ellehcim, if you had looked a bit closer at this site you would have seen that quite a number of people have moved here after doing the Marshall Protocol and found it did nothing for them.      I am not one of these people, being married to a medical microbiologist who thinks that his protocol makes no sense.  Instead, he unearthed the Vanderbilt research and put me on  doxycycline, roxithromycin and metronidazole pulses.  Five years ago my neurologist gave me maybe a year to live.  Since I am still here and improved beyond measure I would say that mine has been a success story.     For successes read Patient Stories: I am there, so is my husband, Dr David Wheldon, and many other people as well...............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 improving bit by bit and no relapses since finishing treatment.

I'm not on CAP for MS but I can say positive things about other problems Cpn can cause. Asthma is supposedly "incurable" but mine is 90% gone after just 7 months on azi (not even full CAP). I leave that 10% only because I'm not quite confident enough to leave home without my inhaler although I have not actually needed to use it for a couple months now. I have also suffered from low back and knee and tendon pain for years but after just the second flagyl pulse the pain has diminished dramatically. Considering I haven't even been on the full proper CAP until very recently I'd say I'm pretty optimisitc about the results so far.

Also, my sister has had fibro for probably 8 years now. She has been on azi for about a year and has had a couple Avelox pulses (not sure what sort of protocol her doc has her on) and is feeling much better today than before starting abx. I can't say exactly how much better but I know a couple years ago she felt like she had one foot in the grave and nowadays she is functioning pretty much normally.

I think I realized part of the reason there are not more success stories here. I was actually hesitant to write my "I forgot I had asthma" ( http://www.cpnhelp.org/i_forgot_i_had_asthma ) blog post because I talked about how great it was not to have had to worry about carrying an inhaler with me on a 45min walk. I sort of feel guilty talking about carrying an inhaler on my walk as if that was such a burden when there are so many people here who wish they could take a walk at all! It is kind of hard to talk about feeling good in front of people who still feel so bad, of feeling happy about my progress when there are so many reading this with frustration and depression of the lack of their own progress. Maybe people feel it's cruel to wave their banner of good health in front of others who may be years away from their own. They're afraid it will cause envy and resentment. I don't know. Just some thoughts.

There are quite a few success stories here! Many of the rest of us are not DONE with treatment, therefore don't feel it's appropriate to call ourselves 'success stories' just yet. At this time, with about a 98% improvement in my 35 months on abx, I consider my treatment highly successful. Once I'm on intermittent therapy, or finish it, then I'm a success story.

I often feel badly that some here haven't responded as well as I have, but that doesn't stop any of us from reporting our 'successes' honestly and accurately. 

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

This is a great thread. Is there a way that it could be relocated and placed under a heading some of our key pages?  Somehow I missed it during a period of many posts perhaps.  Anyway, thanks Sunni for bringing it up again with your further thought for insight.

I do at times feel somewhat similar about strutting my improvements on this mixed site (all types of dis-ease and dis-function a presentations of CPn and other bacterial persistence in the human body).   I am currently, at the time of my post on this thread, at month 15 of the Wheldon variation of CAP. 

I know what is is like to feel the worse than when I started as a result of treatment as I went through the early months of CAP and also have experienced huge improvement in my major and minor symptoms in my life. 

Ellehcim  (initiator of this question thread)  are you still around reading?  Perhaps not, but this question and thread lives on and it has real value in the responses for others who read and have similar questions.  I would like to read your response if you have read any of the responses that members have taken time out of their days to share specifically here.  This is part of the beauty of this website with all the unedited archival posts, when you dig deep you find out what is and can be shared here, and the care, detailed responses and personal commitment exists here with real people who are not looking for fame or profitm just helping each other one on one.

Louise

  • 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

Wow, I dont even know where to  begin.  Thanks to those with the positive posts.  Sorry to those that took offense.  I have not posted as I have been beyond flat out and finally have quit work.  My doc switched me to Valcyte as he thought it was the biggest problem and that is where I should start.  Theres a fun drug and not a whole lot of positive "feel good" posts about it's success either.
I have been sick over 20 years and am a long time student of patience and commitment and that nothing happens over night!  Believe me.  I was not looking for a quick fix nor am I now.  I do believe in the power of the mind though and went searching for positive posts so I could copy and paste them to a folder that I could turn to in times of despair.  They were very hard to find, that is why I started this thread.
For the person who wants to change the name of this thread, I hope you do not.  I have just got on this site again and my mailbox is full of people thanking me for saying what they were afraid to.   They felt hope after reading the posts.  Many didnt agree that people who get better would just dissapear, or at least felt they would leave one final parting success story.  They found these success stories when they  saw the tittle of my thread because it expressed what they were wondering too.
I understand alot of people are asking questions and come here when they are down and out.  I also understand that if I ever get over this thing with Valcyte, the Cpn protocol, or some eye of bat tea I will be sure and post on every site I ever looked for hope on to give others hope too.
Best of luck to all!  I am going back to bed now...
Michelle

Michelle, I am so glad that you came back to look at the responses to your questions and that you have an inquisitive doctor working with you so that you can begin your healing.

I am one of those who doesn't post about my progress very often, mainly because of the nature of this treatment and MS, improvements can come and go by the day but generally the trend is upward. So at the risk of tempting fate, at this moment I can take a hot shower (boiler permitting!), wash my hair in the shower with eyes closed for rinsing without touching the walls of the cabinet. I can stand on either leg, with or without eyes closed (the stork test) ...none of which I could do one year ago pre CAP. Even more astonishing is that the L'Hermittes sign is gone! Pretty good for progressive MS I think ; my GP was suitably impressed too.

I am pre-empting a coming blog update here and that section is where you will find more encouragement from those of us who have embarked on this  treatment. I hope that you will continue to keep an eye on this site as and when you feel able.

speedbird

Here are some thoughts as I believe they apply to myself and months of blood testing.  I have great, kind doctors, an immunologist, g.p., neurologist, and psychiatrist.  

 One of the basic fundamentals that I found on the net from Dr. Paul Cheney, M.D. was the fact that the T helper cells are formed into either Th1 antibodies or Th2 antibodies.  The Th1 attack things in the cell and the Th2 attack things outside the cells.  The Th1 and Th2 antibodies come from virgin antibodies that have not been given a function, they turn into Th1's or Th2's but once programmed, there they stay.  The body has a fixed supply of virgin helper cells so if it makes too many of the Th1's there might be a shortage of the Th2's.  Another point he mentioned is the ability of different pathogens to trick the immune system.  A virus might trick the immune system into thinking it is a bacteria so as to over release the wrong antibodies which may not kill it.  There is also the possibility a bacteria such as Cpn tricks the immune into thinking it is a extra-cellular bacteria when it is a intra-cellular bacteria, again tricking the helper cells.  When seeing common pathogens the body, starting at a fetus is attacked constantly so the term viral and/or bacterial load comes in.  Basically everyone has some, EBV, for example but when it gets too high it is overwhelmed.  It might be that pathogen or maybe a totally different one that is causing the problem.  In effect fix the main problem and the body might fix all the rest.  If you have shown positive for one germ or another list it as intra-cellular or extra-cellular and maybe virus or bacteria, it might show a pattern.

I have used two common blood tests that do not look for any pathogen to see how my balance is, Th1 and Th2.  One is a Tetanus-antitoxoid test that is commonly used with AIDS patients and other people with immune system disorders.  It takes a sample of blood and mixes it with the extra-cellular Tetanus bacteria to see how reactive your antibodies are.  My response was very high so it hints at a strong Th2 reaction.  The other test at this level was a NK cells tests.  NK (natural killer) cells are related to the quantity of Th1 cells produced and mine was very low.  The two tests hint that my immune system is overboard on killing extra-cellular bacteria and weak at intra-cellular bacteria and viruses. 

Both these tests are available from Quest Labs.  This helped me find the possible problem.  A doctor, immunologists, should give these with no problem if your immune system is acting up.  Maybe this will help to find what you are looking for. 

 Know thy enemy,  then attack.

 

Cpn, Mycoplasma, Chronic EBV, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAP (started 12/08), Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NAC(2.4g/day), D3(15,000IU/day)

I first started the series of blood tests I took looking for some type of pathogen.  I looked at the information published at the CDC site and tested for about the first 25 or so most common viruses, bacteria and fungus.  I also tested simple tests for heavy metals.  What I found was very high antibodies to children's basic respiratory infections.  I am also positive for Mycoplasma, EBV and very high Cpn IgG and IgA antibodies.  I have just looked into the Cpn after finding Wheldon's site.  I will be starting his protocol in a few weeks after my immunologists reviews a few more tests.

 I believe what happened that I like many people had Cpn at a very young age.  I had many winters from a teenager to mid-thirties with sore throats.  My tonsils were finally removed at 35 y.o. and the lab said they were infected.  The problem seems that I had strep throat and might have been a low grade carrier all along.  Tie strep throat and many treatments of ten day antibiotics with Cpn and off it went.  Strep is an extra-cellular bacteria so the body makes lots of Th2 antibodies to fight it.  Co-infections are very common and Cpn used the advantage that the immune system was busy with strep and moved right in, more and more with each infection.  I have read that short ten day use of antibiotics can make the Cpn infection worse and that is what I was taking for the strep.  I will post more after I start up with the treatment.

I have M.S. and Chronic EBV.  Chronic meaning active for greater than 6 months.

Cpn, Mycoplasma, Chronic EBV, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAP (started 12/08), Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NAC(2.4g/day), D3(15,000IU/day)

I was BEDRIDDEN, DISABLED before I began CAP. In a hopeless brainfog for what I thought was life.

2yrs later I work out 5days a week and hold a very stressful full time job.

I had all the viruses, infections we all have. Never treated the viruses but somehow they are not there anymore? I for one believe my immune system finally took over. My white cell count is now in the normal range, my CD-57 is normal.

Enough said.

I would not treat the viruses first if I were you but follow your Dr's advice by all means.

Be well,

Chris

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

Chris,
That is very intersting.  I would much rather put my body through antibiotics than the Valcyte.  Valcyte is a VERY ROUGH road!!!  Did you have a high titer for HHV6??  I always question chasing all of these individual bugs one at a time and wreaking havoc on an already disabled immune system all along the way.  You must have taken just enough load off your immune system with the CAP and your immune system took over and ran the other critters off too. (YEAH!!)
If only there was any easy answer!  This is the first year I have come anywhere near these message boards and I have to say, we sure a strong, tenacious bunch!!  I dont think the public really gets how many very functional, able adults, that were athletes and very successful that just suddenly got sick and have stayed that way for years and years.  The more I read about people on these boards the more amazed I am at the human spirit. 
Working on being well,Michelle 

Jim,

Maybe there is a way to post this thread in the Patient stories section?

Thanks all for your support. It's always great knowing you are all here.

Chris

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

Michelle,

  Until I found Cpn and Mycoplasma infections at high levels I was looking at an anti-viral.  My EBV (EBNA) is off the upper lab limits to even measure.  Both my g.p. and immunologists, very good doctors, would not play with an anti-viral, very risky they said.  The bacteria makes much more sense to kill.  My immunologists told me for the most part the body is very good at taking care of viruses but with certain bacteria it has a hard time with.  I recently read, CDC, that the epidemic of 1918 was triggered by a virus but that just opened the door for bacteria pneumonia, most would of survived the virus alone, it was the bacteria that destroyed the tissue and killed.  It killed 150 million in a few years.

Cpn, Mycoplasma, Chronic EBV, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAP (started 12/08), Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NAC(2.4g/day), D3(15,000IU/day)

Michelle,

Yes, my HHV-6, CMV, EBV titers were off the charts. I'm afraid the Valcyte trials are not good with relapse often. I think alot of these Dr's are in the dark thinking a virus is the cause (this was the thought in the 80's and 90's with CFS). If you step back and look at it rationally any one of these infections can bring down the immune system and let the viruses in. Go after the intracellular infections that have hijacked your defenses because without those you have no troops in the army.

My white count was low before I treated my infections. Now normal, as are my platelets and CD-57.

Be well,

Chris

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

ellehciM, maybe I missed something, but I don't see where you tried the Stratton/Wheldon protocol. Azithromycin and NAC do not a protocol make.

 How long were you on Azithromycin and Doxycycline, and how many Flagyl pulses did you complete before you tried Rifampicin?

It is important because Rifampin is far too efficient a CPN killer to use until the zith/doxy/metronidazole have killed most of the CPN off slowly. I'd like to know so that I can build on your experience -- I don't want to switch from doxy/zith/metro to rifampin too soon.

 I don't read every post any more, so if it's in another thread, please post a link and accept my apology for not digging out the thread where you detail your use of the protocol.

 

RonOn CAP for CFS starting 01/06 (NE Ohio, USA)Began rifampin trial 1/14/09Currently: on intermittent

This is my second post about this as I see my post made it to "site news" and was all about people not doing the real CAP.   I will be less elaborate with answer here.  I did what my doc prescribed and I never got the Doxy of Flagyl.  Guess that may be why Rifampin hit me so hard...  I am going to talk to my doctor soon.
I am very interested in a few people who had HHV6 and or EBV and Cpn, and when they treated the Cpn, the virus' seemed to be take care of by the immune system.  I would way rather be taking the CAP than Valcyte!!!  Now I am trying to make an educated decision as whether to hold off on Valcyte and request the "real" CAP and see what happens.  
Anyone else do the CAP and watch viral loads diminish all on their own??
Please understand I a am tired, confused newbie indeed and will try to educate myself more on the rules of posting soon.  
Michelle 

Michelle, Your post made site news only because it turned a light on an issue we've all kicked around a few times before. Our commentary was NOT directed at you, but at the issue, which we find a sticky one (and probably will continue to find sticky down the road).

We tend to have spirited discussion here, but please don't take it personally. Everyone throws ideas out and everyone debates.  ALL of it is done with good intentions.

Those of us who are deep into the protocol and have the basics under our belts, well, we tend to debate the mission and organization of the site, while newbies, who are still swimming in confusion, are just trying to figure out what time is best to take their calcium and magnesium!  It's just the nature of having a board where the newbies and the old salts are mixed in together. Don't give it another thought.

Now, go ask your doctor what they are doing and why they are doing it.

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

ellehcim,

I 've been on Rifampin as part of my CAP since March'08. I thought I would die when I initially added it. I also had similar reactions to other abx I took. The severe die-off reactions lasted for about 3 mns if I remember correctly, you can dig my blogs. However, now after 10 mns on my CAP I have tremendously improved. I have my life back indeed!

Many medications can act as immune modulators including rifampin and doxycycline. If Rifampin were supressing  immune system then it would not be a good choice for some dangerous infections like TB yet it is a main component of TB treatment. 

http://jac.oxfordjournals.org/cgi/content/full/47/6/894

 

Nata.CAP Jan'08 to Dec'09 for arthritis. Doxy, Rif, Azith, Bactrim, Mino, Clarith, Flagyl, Amoxicillin. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Yes, months. Sorry, I should've been more clear. I started CAP Jan.'08.

Nata.CAP Jan'08 to Dec'09 for arthritis. Doxy, Rif, Azith, Bactrim, Mino, Clarith, Flagyl, Amoxicillin. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Michelle,

I haven't seen you in this thread for some time now; hope you will return.  Image removed.

Please have a look at this info when considering The Marshall Protocol.  There are many of us that were forced off the board because the treatment failed us so you don't get an accurate account.  You have to look elsewhere to find that. 

The Marshall Protocol and other fairy tales

Also, HERE's another post I recently posted and you can read some other comments in that thread as well.  

One other recent development not mentioned in the previous links I learned of is there is another ex MPer with a rare form of colon cancer called a neuroendocrine tumor.  I believe the forced D deficiency while on the MP may have influenced this.  

MP staff doesn't share these cancer incidents of MP members because they claim it's not related.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

Michelle, there's an Abe Lincoln story I think applies here.

Lincoln to cabinet: "If you call a tail a leg, how many legs are there on a donkey?"

Cabinet: "Five."

Lincoln: "No, four. Calling a tail a leg doesn't make it a leg."

Be very careful when reviewing patient stories here. There are a great many people telling stories about a "protocol" that have not really used a Combined Antibiotic Protocol. Of course, they have little success -- the Combined Antibiotic Protocol was developed because the other protocols weren't successful.

When I look at people who reported their long-term results, I see virtually nothing but improvement, often in conditions where no improvement is "possible." But when I look at patient stories in the forum, I also find a great many people who had failures.

Most of those who had no improvement either:

  1. Didn't actually use a CAP, or
  2. Didn't do what they needed to minimize the discomfort that the CPn causes when it is killed, and gave up. 

There is good documentation here on how to use the CAP, and on how to minimize the discomfort. That is a primary reason for the site. But there is nothing to prevent people from posting about failures of the above types, and then blaming the CAP for their lack of improvement.

There is also nothing to prevent people who have little actual experience of the process from posting answers that sound as though they are experts. It is the nature of an open forum. You have to sort them out for yourself.

Look again, and I think you'll see that I am right in this -- people who actually use the CAP, and take whatever measures are necessary to minimize the discomfort, have success almost across the board.

RonOn CAP for CFS starting 01/06 (NE Ohio, USA)Began rifampin trial 1/14/09Currently: on intermittent