Deciding when to stop treatment?

 

Hi everyone.

I got onto treatment for Cpni specifically for asthmatic symptoms. From mid-2010 I had asthma that was "managed" by preventer inhalers and rescuer inhalers. About a year later, I started treatment for Cpn.

The symptoms have been steadily retreating to the point that it seems they will soon be gone. I have not needed a rescuer inhaler since late 2011 and I've reduced the preventer inhaler from 3 x per day to 1 x per day and I may be rid of it altogether soon.

This raises a difficult question for me. I would greatly appreciate any thoughts, and rest assured I will take responsibility for my actions!

I continue to experience what seems to be die-off reaction. Primarily, I experience fatigue and poor sleep. The fatigue comes in waves and they seem milder and less frequent now than when I started treatment a few months ago. Sleep difficulties remain, and this is the biggest difficulty for me (the fatigue and mild flu-like reactions have been quite tolerable).

So based on Charles Strattoni's recommendations, I have been hoping to get my antibody titers down to normal levels. However, givein the issues with testing, I am also hoping reactions will disappear.

So the question for me is: if my asthma disappears, do I cease treatment or do I go on?

I am unsure as to whether other things have been caused by Cpn. I've had chronic pain, but it seemed to resolve with physiotherapy. I have chronic sleeping difficulties, and these are exacerbated by abxi, making me wonder whether there could be a link. I struggled to shake viruses also, not sure how this is because we're in an Australian summer. I had a chronic and unremitting cough that is now not much more than an occasional nuisance.

Thoughts would be greatly appreciated, how I act on them is entirely my responsibility :)

Take care,

Steve

 

I've been on Clarithromycin (3 mths), Rifampin 300 mg + Doxyi or Erithromycin (3 mths) as well as NACi (9mths), Vits D, B6, B12, C.

Glad to hear that the treatment is helping you, Steve.  I'm not clear from your signature - have you been doing pulses of either metronidazolei or tinidazole?

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) doxyi(05/11) roxi(06/11) few tinii pulses, amoxi(02/13) metroi pulses (02/14)<

Hi boadicea, no, no pulses of metronidazolei or tinidazole. Good point, I always thought I'd test the reaction before finishing treatment. Not sure whether my GP would be convinced of the need. Then, I can order them online anyway I think.

Steve, You've already been given the answer.  If you don't pulse, all you've done is driven the cpni into hiding.  In order to kill it, you'll need to do the nidazole.  Or, you'll find yourself starting all over again, once the cpn starts to replicate and rebuild.

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 can only give my experience....so here it is.  I'm battling both chronic viral (EBVi, HHV-6, Coxsackie B and HSV1) and chronic bacterial (Cpni and possibly Lyme and maybe one other) pathogens.  

My IgGi and IgA antibody titers to Cpn were as high as the lab measures.  I was put on rifampin (300 mg bidi) and doxyi (100 mg bidi) at the end of April 2011.   In January, my IgA antibodies had dropped to 1:16 (from a high of >=1:256).  

Because my HSV1 IgG is as high as the lab measures and I even have a positive IgM at times, my doctor feels we need to better address the HSV1.  He thinks the Cpn has been taken care of (momentarily at least) so I go off the antibioticsi tomorrow and a week later the valtrex will get increased to 1000 mg per day.  I'm currently on 750 mg per day (which was increased from 500 mg per day on Feb 1st).  

My doctor did not want me on 1000 mg valtrex daily and the rifampin and doxy at the same time as that would be too hard on my liver (in his opinion).  

I had a blood draw today to check the Cpn antibodies so we would know where they were at when I stopped antibiotics.  

Dr. S has not recommended pulsing for me.  (I'm not sure why but he recommended that  I not pulse.) He would have liked for me to stay on antibiotics until my IgG titer dropped but the HSV1 really needs to be addressed so that is what we are doing.   With any luck my IgG titer will have dropped....but for now I'm happy that the IgA dropped so dramatically.

And for whatever reason....increased valtrex, Manuka honey (which I started taking 2 weeks ago) or something else....but the last week I've felt the best and the strongest in the 8 years of my illness.   I am SO grateful!   (And hopefully it will last).

I plan on adding in some immunei supplementsi also (beta glucan and transfer factor) which helped a friend of mine who is now 95% well and he was sick for 7 years.   I feel that if the immune system was working like it should that once the pathogens were beat back they would not be able to come out of latency!

I will post an update on my blog when my labs come back....but to let you know that I'm stopping antibiotics because my IgA labs dropped substantially and I have other pathogens that are  giving me trouble so they need addressing.

For info on other pathogens see:  http://chronicfatigue.stanford.edu/

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Hi Timica

 

Can you tell us about Manuka honey?

 

Thanks

DAILY: NACi 2400MG , DHEAi sublingual , CoQ10 200 mg, vit D3 2,000 IU, multi vits, Folapro, Chinese formula twice a week , Thyme essential oil three times a week,B12, Coffee retension enema, Flagyli 5day pulse once a month

Hi MacKintosh,

How do you know that if I don't pulse, all I've done is "driven the Cpni into hiding"?

Believe me, I appreciate this is the thinking of some doctors, and I value their opinions. However, are they themselves sure that this happens in all people? Based on what evidence? I don't mean evidence in literature, I just mean what is the kind of evidence behind this position? What groups of patients is this based on, and what were the factors involved? How do we know if and when inferences generalise to others? Etc.

Where it comes to convincing my GP, I know of one publication in which Metronidazolei was used against Cpn. That is something, but not a lot. If there are more, I'd be interested to read them.

Putting this aside, though, I know that Jim on Asthmastory found his asthma resolved after only weeks on one antibiotic. He was nearly dead, and ended up hiking hundreds of miles. I've corresponded with him a bit. I can ask him to make sure, but I do not believe he used even a protocol, much less pulsing with abxi targeted at anaerobic bacteria.

Unfortunately, I don't think things are so clear-cut, for many reasons.

I'm in the middle of a bathroom remodel, else I'd spend the time running down the citations for you.  However, you can do that yourself, by checking the Getting Started pages and reviewing the life cycle of cpni, as well as Stratton/Sriram's patent.

Or perhaps someone here has time to run it down. 

As for how do I know, beyond believing what 'some doctors' say... well, I'm not a bacteria.  I don't know.  I believe, based on what some BRILLIANT doctors have learned and developed.  And I sure know my own health improved miraculously after doing the protocol, including metronidazolei.

 

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

MacKintosh, I was referring to citations specifically tinii and flagyli. I have read most of what is on this site, and I have enormous appreciation for the resources as well as the information, support and encouragement that people offer here.

Having said that, I think we all need to show a great deal of humility in the face of what we don't know. From what I understand, around 20% of people don't show signs from serologyi of having or having had infection with Cpni. Of the 80%, presumably a lot are asymptomatic or don't have very obvious symptoms.

I honestly cannot see how anyone could or would try to argue that every single person who has, or has ever had, an infection with Cpn must pulse to be free of issues associated with Cpn. (If you disagree, let me know, because perhaps we are operating from a different starting point).

Given the variability, I cannot see justification for an unqualified position about the necessity for any part of a protocol that has been developed. If I fell very seriously ill with something that could well be attributable to Cpn, I would do anything in my power to follow a protocol right through. I'd ask you to please understand that my primary reason for following a protocol is Asthmatic symptoms. It is incredible that I have apparently just about rid myself of asthma. I could have spent a lifetime on treatments, and I don't know what else might have happened. However, please keep in mind that there are many cases reported in the literature where people recover from asthma and/or Cpn serologyi returns to normal and symptoms abate having only a course of a single antibiotic (typically 4 to 8 weeks, although relapses appear to be quite common and/or there isn't follow up to know, which is not surprising given the info on this site).

We can certainly debate whether these people are ultimately rid of Cpn and issues, but I can't see any reason to dismiss this kind of research and evidence.

Please also keep in mind that strong statements like yours can put people off visitng this board. I can and have put myself in others' shoes, and I feel fortunate that I have not suffered more with my Cpn infection. I have said before that if I'm not welcome here, because this site is not intended for people like me, I will show due respect and leave and never return. The offer stands.

As long as I stay, though, I will ask questions. Please understand, I have read just about all the resources here. My questions are not asked with ignorance of the wealth of information here. Indeed, I've read just about all literature on Asthma and Cpn (and Mycoplasma) that I can get my hands on, and very little of this literature is on this site. I ask the questions because I really don't think it is clear-cut for all people in all situations how to proceed.

Take care.

Steve, If my strong statement that the nidazoles kill the bacteria put some people off the site, there's not a lot I can do about that.  I do not believe you can kill the disease without taking them (or some replacement for them that we're not yet aware of). 

I believe MSi, chronic fatigue, rosaceai, and a whole host of other so-called 'autoimmune' diseasesi are caused or triggered by cpni, and only our geneticsi and circumstances dictate which autoimmune disease cpn manifests itself as.  Apparently, much of the population is able to fight it off successfully and they never succumb to any of the diseases it can cause.

Driving the cpn into hiding with one antibiotic is great; it should halt replication of the bacteria.  But, if you stop the doxyi/azith, the bacteria will activate again.  In theory, I suppose one can do repeated courses of just doxy and azith every few months or every few years for those asthmatic 'relapses' you speak of, and maybe temporarily stalling the bacteria is enough to live a reasonably comfortable life (if you're not terribly sick to start with). 

It just seems to me that if these diseases are caused by cpn, one can't truly eliminate the disease unless one eliminates the cpn.  As for cpn serologyi returning to normal, your dismissive comment that 'we can debate whether the cpn is gone or not' is actually the entire crux of the matter, not a philosophical exercise. (And I'm not sure how accurate cpn serologyi is, once an antibiotic or two has been introduced.  How well  does the body or the lab register antibodies, once the bacteria is confined inside the cells?)

No one is telling you to leave the site.  Nothing in my post even remotely intimated that.  Ask all the questions you want.  If you don't like the answers, I don't know what to tell you.  You might take note that I rarely sugar-coat and, though I wish I had the talent of gracious Southern women who can sweet-talk til the cows come home, I don't.  Especially not when I have spent the day tearing down walls and doing plastering. I had hoped Norman, or Rica, or Dr. Wheldon, or Sarah, or LifeontheIce might happen by and have a bit more time to explain what it takes to kill the bacteria, and why.  A few people here keep copious notes on reference material and can put their fingers on it instantly.   If you took that as an affront, I'm sorry.

But, there is a protocol.  It isn't a cafeteria protocol, where we pick and choose which parts of it we use. ( Believe me, if that were the case, I'd never touch the repulsive-tasting flagyli.)  It isn't optional.  If you want to discuss an apparent cure without flagyl or tinii pulses, write a private message to Astrodiana.  She thought she was the exception to the rule but ultimately found her disease flared back with a vengeance without pulses.  And, she is now pulsing nidazoles.  She might be exactly the person you should have this conversation with.  Since my responses bother you, I will refrain from commenting in this thread again. 

 

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

 

Hi MacKintosh,

You say: "You might take note that I rarely sugar-coat and, though I wish I had the talent of gracious Southern women who can sweet-talk til the cows come home, I don't."

I have taken note, and I genuinely don't care how direct you are. The more, the better. I'm more concerned that I will offend someone here. So I am sure you will reciprocate, and understand in my response now that I'm the same: I don't sugar coat.

You said:

"Apparently, much of the population is able to fight it off successfully and they never succumb to any of the diseasesi it can cause."

"But, there is a protocol.  It isn't a cafeteria protocol, where we pick and choose which parts of it we use. ( Believe me, if that were the case, I'd never touch the repulsive-tasting flagylii.)  It isn't optional."

This seems to me a false dichotomy. It seems to me you are saying that either you have a disease or you don't (there is actually great variation in the degree of severity of most diseases). It seems to me you're saying that if you do have a disease, you *must* take the protocol, the whole protocol, and nothing but the protocol. It's not a cafeteria protocol, after all, right?

If someone can *fight it off*, isn't this prima facie evidence that the immunei system is either killing Cpn or permanently holding the bacteria at bay?

How do you know which is the case?

So let's suppose that actually, there is a range of severity of diseases. For example, suppose that in some people Cpn causes mild asthmai for a period that resolves; whereas in others, it causes serious respiratory sickness that is fatal. When do you decide whether someone has the whole treatment versus nothing at all. Why is there no scope for something in the middle?

You say: "It just seems to me that if these diseases are caused by cpn, one can't truly eliminate the disease unless one eliminates the cpn." Firstly, perhaps you're right, perhaps you're wrong. Many things have multiple causes and if so, it is a fallacy to assume a single cause. One person may have Cpn infection (or past infection) but have geneticsi or other factors that mean they don't get a disease (as you acknowledged). Another person may have the same number of EBs enter their body and get a disease.

Secondly, I struggle to see how you are allowing for immune systems to kill Cpn. I would re-state what you said as follows: It seems to me that if a very serious or debilitating disease is caused by cpn in someone, given whatever other factors exist, then unless you know another way to deal with the disease, it makes sense to take all possible steps to eliminate cpn in that person". Your statment is, in my view, too general (in the sense that it implies inferences beyond the known facts).

Things aren't so simple. Diseases have multiple causes. Some people may fight off Cpn by killing it without abxi. Some people may need some help to kill it to a level that their bodies can then deal with the rest. Who knows? I certainly don't pretend to, but I find it very difficult to swallow the idea that the treatment must be the same for all people, in the face of so many unknowns.

Your reference to Astrodiana is a red-herring. Clearly, there is always the chance that for every person who didn't have enough treatment, there are others whose condition has resolved and they're getting on with life.

Once again, because I am very concerned about offending others, I stress that if I had a more serious and/or debilitating disease, I would be intent on following a protocol through.

You say: "Steve, If my strong statement that the nidazoles kill the bacteria put some people off the site, there's not a lot I can do about that." I didn't mean that was the strong statement, but then I'll take the blame for being vague. I meant the statement that if you don't pulse, all you've done is drive Cpn into hiding. That aside, though, there is something you can do. You can choose to make more moderate or qualified statements. There's a difference between not sugar-coating and acknowledging you don't know for certain that something is clear-cut. You seem to think things are clear-cut that I think are anything but.

 

EDIT: I should be clearer. The reason I think statements like this could put people off is that GPs may think it sounds crazy that you must have tinii or flagyl for Cpn, when it's not (at least in Aus) first or second-line therapy. It's not so much the statment on its own: it's the potential flow-on effect if someone conveys something like this to a GP who has little familiarity with Cpn, such as summary dismissal by the GP of the whole thing.

You seem intent on continuing this adversarial thing.  I am not engaging. 

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

Hi MacKintosh, please don't ascribe intent to me. I have no desire to be any more 'adversarial' than is unavoidable (in the sense of opposition) in presenting counter-points.

You said: "Ask all the questions you want.  If you don't like the answers, I don't know what to tell you." If you read my post, you'll see that mostly, I stated why I think the 'answers' are questionable and most of the time I stated the questions I believe are unanswered.

So fair enough if you don't know what to tell me, but I don't think it is fair to start calling people adversarial when you've taken a very strong position and said that if I don't like the answers, you don't know what to tell me. I'm not convinced by your answers. Are you suggesting I should pretend otherwise?

Above all, let's put things in perspective. I think people should debate things, but at the end of the day, I've been on a CAPi for nearly seven months, and it hasn't been easy to convince my GP. I've encouraged four people to be tested for Cpni, and the one who has been tested has positive serologyi for Cpn. I am well and truly open to pulsing, and I'll probably do so at least to test what happens. Indeed, a close relative had an awful reaction to Flagyli and she is one of the ones I've persuaded to get tested. I'm just not convinced things are clear-cut as you seem to me to think they are. Isn't that fair enough?

Steve~

Iagree with you that things are not as clear cut as they could be.  There is no double blind placebo controlled study that shows how to best eradicate Cpni.   There is this study which is promising, but they admit that how to best eradicate Cpn has yet to be identified:  http://www.ncbi.nlm.nih.gov/pubmed/20155838

No one knows for sure what causes MSi.  There are clues that it could be caused by an infectious pathogen, and Cpn, HHV-6 and EBVi have all been implicated.  But nothing has been proven.  

So, what we are left with is that people on forums like this one are sick and are trying to get their health back.   They (we) are willing to try any reasonable means to do that including taking antimicrobials and supplementsi.

What I have noticed on this forum and a Lyme forum that I frequent is that people go beyond sharing what their experience is or what has worked or not worked for them; to telling others what they should be doing.  I think that is a mistake.   

I've met Dr. S personally and we have corresponded over the years.  He recommends that I not pulse which goes against what others claim to be the best treatment.  Maybe it is the best treatment for them, but it isn't for me in my particular case.

All we can do is look carefully at what science tells us, listen to others experiences and choose the best route that will work for us and that our doctors (should we be lucky enough to have supportive ones) allow.    Then we can share our experiences with others and hope that they may glean tidbits that will help them achieve better health.

My best to all as we struggle to get well.

Timaca

 

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Thanks for the study; it is a very interesting one because of the CAPi and the strong design. On the other hand, it's small and one group, but it takes small steps. Thanks also for letting me know that Dr S recommends you personally don't pulse, for whatever reason. That is really interesting to know, and it somehow doesn't surprise me.

I agree with you about sharing experiences as opposed to telling anybody what to do. I hasten to add that I did ask for experiences that might inform what I should do.

As I said at the outset, I have a real conudrum because the reason I first got onto treatment was asthmai. The asthma seems to have just about disappeared. However, largely from this website and forum, I've learned to tune in carefully to die-off symptoms, and I certainly have them. So now I feel I'm still experiencing some degree of die-off, but if I were going by asthmatic symptoms, I'd be off the treatment by now.

Thanks again and take care.

My doctor (who is quite familiar with protocol) is not planning to do the pulses with me. I will be on all the other antibioticsi eventually. So far I am on NACi and Zithro. Each case is different.

 

Robiroo

Steve,  keep us informed over time how it all goes for you.   If you stop and if you pulse.

You may do OK and live well even with a Cpni chronic infection low level.   Over time things

may come back and you may decide to treat again.   While there is life there is opportunity

to start this protocol again if necessary.    Watch your signs and keep ahead of them if they return.

 I'll be looking for your name over the years to see what transpires for you.   We are all individuals things that work for some are not needed by others.

Keep us posted.   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

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