Getting Started

Getting Started

Getting Started Module

This module is aimed at people new to the problems of treating Chlamydophila Pneumoniae, Cpn for short, (formerly known as Chlamydia Pneumoniae). If you already understand the problems then I suggest you move on to the handbook.

Michèle Wed, 2008-04-23 14:05

About Cpn

About Cpn

About Cpn

The first thing to understand is that Cpn (Chlamydophila Pneumoniae formerly known as Chlamydia Pneumoniae) is unlike most bacteria in that it cannot survive as an active organism outside your body's cells. Most bacteria can be treated fairly easily with antibiotics because they circulate in the blood, this one cannot.

Living inside the cell gives Cpn several advantages:

  • It is not easily detected, if it is detected at all it is usually its footprint that it is found, such as traces of inflammation or immune sign posts.
  • It is protected from the immune systems by existing inside the cell, for most of its life cycle the immune system does not even see it or recognise it as a threat.
  • It does not need to generate its own energy source, it steals it from the cell.
  • Cells are very efficient at keeping noxious substances out, (to cells antibiotics might well be seen as noxious substances) so finding an antibiotic that penetrates the cells and affects the Cpn in any way is a precise exercise.

Another important aspect of Cpn which makes it different to ordinary bacteria and consequently more difficult to treat is that it has three life stages: EBs, RB, and Cryptic.

  1. EBs stands for Elementary Bodies, they are spore-like forms whose only role is to spread the Cpn infection, the only stage at which Cpn circulates in the bloodstream. The EBs aim is to infiltrate a cell as soon as possible. At which point it will become an active RB.
  2. RBs stands for Reticulate Bodies, the RBs are the active stage of the bacteria, their role is to produce a multitude of EBs which they do inside the cell, using stolen cell energy. They stop the cell from going through its natural life cycle and prevent its natural death (called apoptosis). When the conditions are right the RBs will allow the cell to die and release EBs into the blood stream. If conditions are not right the RBs will convert to the cryptic form of Cpn.
  3. Cryptic Cpn is the hibernation phase, in this state they are not vulnerable to most antibiotics and are not active.

When treated with a Combined Antibiotic Protocol (CAP), Cpn dies and as it does, it releases toxins and causes the immune system to produce inflammation in the process of clearing up, these events make people feel unwell. The level of discomfort people feel depends on their individual load of Cpn and the effectiveness of their immune system.

So where do you go from here? It is tempting to want to plunge straight into the treatment but there are several things that you need to think about before you get started.

  • This treatment can take a long time (months and years) and at first it is difficult to notice the small improvements you are making so you need realistic expectations.
  • You need to check your symptoms against those of the diseases associated with Cpn.
  • You need to be familiar enough with Cpn and the treatment protocol to be able to talk to your doctor who may not understand the difficulties involved in eradicating Cpn.
  • You need to be in the best condition you can be, by taking the recommended supplements which help your body cope with the die off effects of the treatment.
  • This treatment can be difficult to tolerate, although a significant number of people have very little in the way of reactions.
  • You need to get familiar with the website and the information it contains so you can find what you need to support your case with your doctor.
  • Expect to have to work at finding a doctor who will treat you. The number of patients undergoing this is small, the protocol is not well known by doctors. I would go so far as saying that a great many doctors would be suspicious of using multiple antibiotics for the length of time needed to eradicate Cpn.
  • Do not expect tests to be positive or accurate for the reasons explained above. Things would be a lot simpler if we could say to our doctors: “Look at these results, there is no doubt I have a Cpn infection.” Unfortunately that is not the way things are…

The other place to go is the FAQs section which may well answer some of your questions and point you to more information, including what tests to request.

Please read the site’s disclaimer statement and be aware that information in this document does not replace your doctor’s advice.

 

Michèle Sat, 2008-04-26 05:04

Expectations

Expectations

What to Expect from the Treatment.

This treatment will not make you better overnight. Unlike most bacteria Cpn is difficult to get rid of and will take a long time to eradicate. If you think of it as similar to tuberculosis treatment you will have a better understanding of the complexity of the protocol you are about to undertake and the length of time it will take.

One of the problems to getting started that a significant number of people report, is what is described here as 'brain fog'. 'Brain fog' is something that may have crept up on you which makes it more difficult to understand things, make decisions, be rational, remember things. So trying to understand how Cpn makes you ill, deciphering something as complex as the Combined Antibiotic Protocol (CAP) and knowing enough to be able to convince your doctor to support you in the treatment can be quite an undertaking. Be patient with yourself and expect to read things more than once.

Another of the difficulties you might encounter in the beginning is that you are likely to feel worse, maybe function less well and discover new areas of infection in your body that you knew nothing about. The reason for this is: when Cpn dies it releases toxins in the body which make you feel worse and may cause inflammation that affects your ability to function. Often old injuries resurface and even areas that had not troubled you up to the present can become painful or uncomfortable. This may be particularly true of the joints of people over 40.

These worsening symptoms might well go on for several months. This can be very frightening and unsettling especially for CFS or MS patients who might suffer from extreme fatigue or pseudo relapses. A pseudo relapse is an event that feels very much like the real thing but usually recovers without leaving any damage behind. This may happen several times during the treatment.

On the other hand you may be one of the lucky individuals who have little or no reactions to the treatment but still make significant progress.

Keep in mind that reading forum/blog posts can give you a skewed view of the difficulty of the CAP treatment, as you will see more posts from people having difficulty and needing help or encouragment than from people experiencing more mild reaction.

Progress will come slowly at first, it may be subtle and practically unnoticeable except in hindsight. Using a blog to chart your progress or keeping a diary will help to see how far you have come.

In the first few months you will gradually become accustomed to taking the antibiotics and you may well see some notable improvements, especially if you suffer from conditions involving the upper respiratory system, such as asthma, bronchitis, sinusitis and otitis or vertigo.

Another often reported initial improvement is body temperature. Many new patients report an inability to control body temperature: icy cold extremities that nothing will warm or repeated flushing. These symptoms often rectify themselves in the first few months.

The treatment of Cpn with an antibiotic protocol is still a work in progress and there are not enough patient experiences to be able to predict how long the treatment will go on for. What we say is that each patient has a different load of Cpn located in different parts of their body which has been afflicting them for a different length of time, so recovery will depend on all these variables and the outcome cannot be predicted. Suffice it to say that the majority of people who continue to report are noting a significant return to health. Dr. Stratton of Vanderbilt University who first formulated a treatment for Cpn suggests that a 3 to 5 years period of treatment is likely to be necessary.

I recommend that you read the Patients’ Stories section to get a feel of what people’s experience of the treatment is like.

Michèle Sat, 2008-04-26 03:42

Diseases and Symptoms Associated with Cpn.

Diseases and Symptoms Associated with Cpn.

Diseases and Symptoms Associated with Cpn.

The following is a partial list of diseases which research has shown that a Cpn infection maybe implicated in. There is further explanation about this association between Cpn and disease in the handbook, but this should give you an idea whether your problems may be put at the door of this particular bacterium, many patients having more than one of these diseases:

Diseases most common to Cpnhelp members

Other diseases Cpn may be involved in

Multiple Sclerosis (MS)

Alzheimer’s

Rheumatoid Arthritis (RA)

Dementia

Inflammatory Bowel Disease (IBD)

Chronic hepatitis

Interstitial Cystitis (IC)

Systemic lupus erythematosus

Fibromyalgia (FM)

Graves' disease

Chronic Fatigue (CF) and Chronic Fatigue Syndrome (CFS) also called ME

Chronic inflammatory pathologies such as aneurysms

Thyroidosis

Beschet's disease

Hypertension

Graft versus host disease (graft rejection)

Asthma

Haemorrhoids

Peripheral neuropathy

Ulcerative colitis

Oesophagitis

Disseminated intravascular coagulation

Sinusitis

Atherosclerosis

Arthritis

Kawasaki's pathology

Scleroderma

Coronary artery disease

Diabetes mellitus

Stroke

Sjogren's

Crohn's disease/vascular inflammatory pathologies

Sarcoidosis

Parkinson’s

Irritable Bowel Syndrome (IBS)

Tracheobronchitis

Laryngitis, Chronic or recurrent sore throat

Chronic vascular headaches

Rosacea

Chronic inflammatory bowel disease

 

Additionally some patients with Alopecia, and Prostatitis, have reported improvements in their condition.

 

Michèle Sat, 2008-04-26 03:47

Treatment Protocols

Treatment Protocols

Treatment

Combined Antibiotic Protocols

Below are a number of different protocols as recommended by Drs Stratton, Sriram of Vanderbilt University and Dr Wheldon UK consultant microbiologist.   These protocols are constantly being adjusted and you might find that some patients are following a different one to you.   To a certain extent the protocol you follow depends on your Cpn load, and because that is often an unknown in the beginning of treatment we recommend that you start with Dr Wheldon’s protocol unless you or your physician have consulted a doctor familiar with the treatment of Cpn.  

With all the protocols it is important to take note of your reactions and tailor the treatment to suit your condition.   It is recommended that before you start you should ask your doctor for a liver enzyme test and a standard blood test to provide a bench mark for future comparison.

Wheldon Protocol

Doxycycline       100mg                   Once a day, to start.          

Take this alone until well tolerated  (You will take 200mg/daily, once you're on the full protocol)

Azithromycin     250mg                   Mon, Wed, Fri   

OR                                                                                         

Roxithromycin 150mg                   x2 a day               

Add one OR the other to the 100mg Doxycycline

When the above is well tolerated add another 100mg of Doxycycline

Metronidazole also called Flagyl Pulse

When the first two antibiotics are well tolerated start pulsing the third.  For one day, every three to four weeks initially.  Increase the number of days per pulse gradually to five days.

Metronidazole 400mg                   x3 a day               

                                or 500mg             x3 a day               

Dosage varies from country to country

 

Tinidazole           500mg                   x2 a day               

This is an alternative to Metronidazol/Flagyl

 

When the protocol is well tolerated Doxycycline and Azithromycin (or Roxithromycin) are taken continuously as outlined above.   They prevent Cpn from replicating as well as killing it slowly (these antibiotics are called bacteriostatic antibiotics).   After three or four months of these two antibiotics you can start pulsing the third antibiotic.  

Definition of a pulse:   Think of a cycle of treatment as a period of time.   How long that period is depends on how well you are coping with the Combined Antibiotic Protocol (CAP), usually this cycle is three or four weeks long.   Once during this period of time you take Metronidazole (or Tinidazole) for a period of up to 5 days at the full dose, this is what we call a pulse.   In the beginning of your treatment the pulse may be only one day long, as you tolerate the CAP you can increase the number of days you take the metronidazole.   Well into the treatment you may want to increase the number of days you take Metronidazole (or Tinidazole) beyond the 5 days recommended.

The reason behind a pulse is that Metronidazole or Tinidazole are the killer antibiotics (called bactericides) and when Cpn dies it releases toxins into your blood that your body has to process.   This pulsing allows your body to recover and makes the treatment more bearable.

Dr Wheldon regularly revises his protocol and it is worth visiting his website for the latest information.  

 Sriram Protocol

Rifampin                             300mg                   x2 a day               

Take this on its own for 2 weeks.

Azithromycin                     250mg                   Mon, Wed, Fri 

Take this with above for duration

Metronidazole                 400 or 500mg     x3 a day               

Start taking this a month into the treatment and take it 15 days on and 15 days off for the duration of the treatment

Sodium or Calcium Pyruvate      Up to 4g              

through the day: start this 8 weeks into the treatment.

 

Rifampin is a very effective killer of RBs and therefore it may take a while to feel comfortable taking it.  It may take longer than the two weeks suggested in the chart.   It is also worth noting that Rifampin can affect the efficacy of other drugs you may be taking such as Thyroxine for example.   It may also cause your liver enzymes to become elevated and for that reason you should be closely monitored by a doctor.

In this protocol Metronidazole pulses are 15 days long, this may well be very difficult to sustain and in that case patients have been advised to reduce the pulse to 7 days in 21.

Stratton Protocol

Dr Stratton recommends that you start by taking 600mg of N-Acetyl Cysteine (NAC) a day; this is a supplement which you can buy over the counter.   Taking NAC may reveal the extent of the Cpn load.   You may get the flu like symptoms described here.  If the reactions are severe you may need to take 5mg of prednisone a day for the first few weeks of therapy.   If there are no reactions increase the dose of NAC to 1200mg a day and continue to take this for the duration of the treatment and beyond.

Clarithromycin                  500mg                   x2 a day

OR

Roxithromycin                  150mg                   x2 a day

OR

Azithromycin                     250mg                   1 on MWF

Take one or the other of these antibiotics for two weeks. 1 hour before taking antibiotics, take 6gm pyruvate.   More pyruvate may be taken during the day to alleviate reactions to antibiotics.

400 mg of Ibuprofen twice a day 1,200 mg of NAC twice a day if needed to moderate reactions

 

If you get major reactions continue on the antibiotic alone, leaving out the pyruvate until the reactions subside. If you don’t get severe reactions continue as follows:

Doxycycline                       100mg                   x1 a day               

One hour after 6gm pyruvate.

When well tolerated add another dose of pyruvate and doxycycline daily.

When the two antibiotics and the pyruvate are well tolerated start pulsing Metronidazole building up to 7 days in every month at the same time as the other antibiotics and pyruvate.  

 

Metronidazole                 400mg or 500mg               x3 a day               

Depending on the dosage available

 

1st pulse 1 day, 2nd pulse 2 days, 3rd pulse 3 days etc

When reactions are acceptable you may want to reduce the time between pulses so you are doing a pulse once every 3 weeks.   Here are further details on this protocol and how you can progress from a different protocol to this one.

Michèle Sat, 2008-04-26 03:59

Recommended Supplements

Recommended Supplements

Recommended Supplements

As well as the antibiotics (ABX) our bodies need these supplements to help them recover from the effects of Cpn, the ABX and the toxins. The most important of these is N-Acetyl Cysteine (NAC). It supports the liver which is going to be doing some hard work during this treatment but more importantly it causes the EBs (Elementary Bodies) to burst open before they have a chance to infiltrate a cell. So it has a direct action on Cpn.

Supplements

NAC 600 to 1200mg, twice a day - build up gradually, can cause heartburn

Vitamin C 1g, once a day

Vitamin E 800iu, once a day

Omega 3 Fish Oil 400mg, up to three times a day

Evening Primrose Oil 1g, once a day

 

Acetyl L-Carnitine 500mg once a day } - Combination available

Alpha Lipoic acid 150mg once a day   }

Co-enzyme Q10 200mg once a day 

Selenium 200 micrograms once a day

Turmeric 400mg once a day - Can help alleviate toxin reactions

Melatonin 1.5mg, at night - If needed for sleep

Vitamin D3 2000iu, work up to twice a day, has antibiotic properties, may cause some die                        off symptoms

Vitamin B12 4000 micrograms, several times a day - sublingual lozenges. After three                                months of treatment once a day.

Lactobacillus acidophilus 1g, twice a day, not to be taken within two hours of antibiotics

Vitamin B complex Once a day

Calcium 500mg Magnesium 300mg in the evening,  usually found in combination. Not to              be taken at the same time as Doxycycline.

 

The bold supplements are considered the ones that are essential; on the whole these are fairly inexpensive. But if you can afford it you should aim at taking at least the complete list.

There are other supplements that you may be used to taking or that your doctor may recommend so this is not an exhaustive list. There is more information on supplements here. There is more information on antifungals and probiotics here.

 


Michèle Sat, 2008-04-26 04:05

Reactions and Remedies

Reactions and Remedies

Reactions

When you start a Combined Antibiotic Protocol (CAP) you may get a number of different reactions. Here is a chart of possible issues and followed by some remedies that might help alleviate the discomfort.

Symptoms

Porphyria

Inflammation (Cytokine response)

LPS endotoxin

Mental/Emotional




Insomnia

X



Depression

X

X


Anxiety

X



Psychosis (hallucinations, delusions, paranoia)

X



Brain fog

X

X


Mental confusion and poor judgment

X



Gastrointestinal problems




Nausea

X



Stomach cramps

X



Constipation

X



Diarrhoea (also from antibiotics upsetting bowel flora)

X



Episodes of tachycardia (rapid heartbeat)

X



Pain




Painful menses

X

X


Generalized pain and hypersensitivity

X



Chronic headaches and migraines

X

X


Abdominal pain

X



IBS type flare up

X

X


Other Physical Symptoms




Severe Fatigue

X

X

X

Muscular weakness

X



Exercise intolerance

X



Sunburn-susceptibility & photosensitivity (which also can be caused by some antibiotics)

X



Skin




Blisters

X



Itching

X

X


Swelling

X

X


Dark coloured urine

X



Chills- can’t get warm



X

Fever


X

X

Achy “Fluish” feeling


X

X

Cytokine Remedies: pain killers, anti-inflammatories such as paracetamol and ibuprofen.

Endotoxin Remedies: vitamin C, EmergenC, paracetamol, ibuprofen, chlorella. (A vitamin C Flush is a stronger alternative to just adding Vitamin C)

Porphyria Remedies: Most of the above should respond to anti porphyria agents such as:

Glucose 3-6 grams at a time until symptoms are relieved,

Agents that absorb fat soluble porphyrins and keep them from being reabsorbed like:

1. Activated charcoal, 12 capsules taken at least 1.5-2 hours before and after eating or other medications.

2. Prescription cholesterol medication like Questran (cholestyramin) or Welchol. Cimetidine 400-800mg daily, which reduces certain porphyrins in the bloodstream. Propanalol to limit symptoms like anxiety, rapid heart rate, and autonomic arousal.

Also worth investigating is a vitamin C flush.

Porphyria:

A rather complex explanation of the production of porphyrins can be found by clicking on the above link, but suffice it to say that killing Cpn can result in the heme production being out of step, which results in a backlog of porphyrins that are difficult for the body to deal with and can result in some of the above symptoms.

Other reactions

MS Pseudo-relapses: Although a relapse may occur in the early months of treatment, many 'relapse-like' events can take place during the treatment, often triggered by adding another antibiotic or by doing a pulse. The only explanation we can venture at is that the action of an antibiotic provokes an inflammation and immune response at the site of a Cpn plaque in the brain. 

Remedies: Time, and in severe cases, steroids.

Fatigue during treatment: Dr. David Wheldon suggests that fatigue could be the body’s reaction to inflammation. It is also common with porphyria.

Remedies: Dosage management of antibiotics and time (just waiting it out). Anti porphyria measures.

Constipation and diarrhoea: due to antibiotics, porphyria, diet or supplements.

Remedies: for diarrhoea, charcoal and over the counter remedies. For constipation chlorella, probiotics, fibre rich diet etc.

NAC flu: anything from sneezing to feverishness, with painful joints, headaches, runny nose, sore throat and coughs in between.

Remedies: Time and backing down on the dosage.

Heartburn: Certain substances such as Doxycycline, NAC, Flagyl, Rifampin can cause heartburn in some people. This may have something to do with stomach acid production, either too much acid or not enough. Telling which is which is a matter of trial and error.

Remedies: Some people have found a Bromelain supplement helpful. Always drink plenty of water when taking the medication. Be careful not to take antacid tablets containing magnesium when taking doxycycline. Here is a useful link to understanding heartburn provided by Wikipedia.

 

Michèle Sat, 2008-04-26 04:09

Getting to Know the Website

Getting to Know the Website

Getting to Know the Website

There are two important access tools on the website pages: the tabs at the top of the page and the blue edged box on the left with your username at the top of it.

The tabs are self explanatory and you need to explore them at your leisure. The blue box is the area through which you will access other people’s blogs and profiles and create content yourself.

Recent posts is a handy tool for seeing what has happened since you last logged on.

Under ‘create content’ are a number of headings, you only need to concern yourself with blog entry and forum topic at this stage.

A ‘blog’ is the general purpose communication tool that you start but other people contribute to. We try to maintain the ‘identity’ of a thread by staying on the topic addressed by the author. At times the blog gets ‘highjacked’ by another topic. It happens! We usually suggest that the person who introduced another topic start their own blog. We don’t get uptight about it though.

It is helful to others if you add a signature line, stating your condition and current treatment, which will help others understand your question in the context of your unique situation.

Unfortunately due to the site's software limitations your signature will not appear in the initial post in a blog; it only appears when you post a comment in reply to a blog. (Some people do just that, they post a blog then post an empty comment so that people can see who they are and what their problem is.)

To create the signature in your profile: go to my account in the blue edged box on the left, you will be taken to your profile. Click on the edit tab and at the end of the page there is a window in which you can write your signature. Some of us find there is a limit to how much we can write in the box that will show up in our signature, so you may have to experiment with it a bit. It is difficult for others to remember the details of each and everyone’s health condition, a signature helps us remember you.

A ‘forum topic’ is a discussion tool. The author will suggest a topic for discussion by creating the first post. The content has been as varied as comparing protocols, discussions on the merit of different antibiotics, ‘back porch’ musings, travel, etc

Other useful headings in the blue box are: glossary, my account, my inbox.

The glossary explains terms and abbreviations commonly used on this site. You can also add glossary terms via this heading. The glossary is always working in the background; when you see the little brown 'i' after a term or abbreviation, it means that term is in the glossary. If you hover your mouse over the 'i' it will give you the meaning of that term.

My account allows you to access your profile and change things there.

My inbox allows you to view your private messages, and send private messages to others. When you have messages in your inbox a number will appear in brackets beside this heading.

Lastly, not the most precise tool on the site, but useful if you know what you want, is the search box. It is located in the banner on the right hand side. Be patient with it and you might find what you want. Alternatively you could use the google search engine for searching the site, the instructions are here.

Michèle Sat, 2008-04-26 04:17

Finding a Doctor

Finding a Doctor

Finding a Doctor

Although well researched, this treatment is not well known and some doctors are likely to shy away from prescribing long term antibiotics (ABX), so unless you have a doctor who is willing to listen and learn and even get in touch with the experts at Vanderbilt you may have to find a doctor further afield. We have a very short list of doctors known to prescribe that have been consulted by our members. Some of them travel hundreds of miles for a consultation with a physician who is confident with the protocol.

However, your doctor might an open minded person and willing to prescribe for you given a little information. Our experience tells us that busy doctors do not have time to read the in depth material available on this website, although it is always worth asking them if they are interested. Here is a link to a letter crafted by members that outlines the basic problems of treating Cpn.   Also available here is a short version of the starting protocol which you could give a doctor who was willing to prescribe for you.   Addtionally there is more information available on the website here and on Dr Wheldon’s website.

If these strategies fail, then it would be worth looking for a Lyme Literate doctor (they are more familiar with the use of antibiotics in the treatment of Lyme disease) and these are some of the places to look:

Lyme Disease Association

Co-Cure.org

Michèle Sat, 2008-04-26 04:22

FAQs

FAQs

 

FAQs

 

Antibiotic Questions

Q. Do I take Doxycycline on an empty stomach?

A. No, always take it with food, or at the minimum a glass of milk. Do not lie down for at least 20 minutes after taking it. It is OK to take it with dairy food.

Q. When we add Azithromycin to Doxycycline do we take them at the same time?

A. Yes, you can take them at the same time. Latest instructions say that you can take it with or without food. If you are having trouble assimilating both at the same time they can be taken separately.

Q. Do I have to take all the antibiotics?

A. The short answer is yes. This is a Combined Antibiotic Protocol (CAP)and you will need to take the two bacteriostatic antibiotics continuously for the duration of the treatment and Flagyl in pulses. Less than that risks incurring resistance and incomplete clearance of Cpn. There are of course other antibiotic protocols that use four or more antibiotics but we would not recommend these initially.

Q. Do I take Doxycycline and Azithromycin for three weeks, then stop them to take five days of Flagyl?

A. No. You always take your Doxycycline and Azithromycin, then you ADD IN the Flagyl pulse. During the pulse, you are taking all three meds each day. Consider the month to be 28 days long. On days 24 through 28 you take Flagyl along with your other medications.

Q. What if I have to stop taking the antibiotics for a while? Will Cpn become resistant to them?

A. It is not a good idea to stop and start the antibiotics, but Cpn will not become resistant to the antibiotics very quickly so that odd occasion should be alright.

Supplement Questions

Q. Do I have to take NAC?

A. No, it is not essential, but it does have a direct action on EBs and therefore may help to reduce the length of time you have to do the CAP. It is also beneficial to the liver.

Q. Can you tell me what the supplements do?

A. You can find a quick guide to the roles of supplements here.

Q. Where to buy supplements?

A. Most people, even people not living in the US find that the following three sites are much more economical, provide more suitable dosages and good quality supplements than those found locally:

www.iherb.com

www.vitacost.com

www.swansons.com

Here is a link to a cpnhelp.org page which takes you directly to the recommended supplements at vitacost.com.

Q. Do I have to take all the supplements?

A. Take as many of them as you can afford. If you look at the supplements page here, the ones that are highly recommended are in bold letters.

Reaction Questions

Q. Will I have reactions to the CAP?

A. Many people do, but not everyone will. Everyone is different, and each will have different reactions depending mostly on the Cpn load and the sites of infection.

Q. Why do I have to feel bad before I feel better?

A. Cpn will not go quietly. It is difficult to kill and when it dies it releases toxins into your body which makes you feel ill. The longer the treatment goes on the less ill you will feel because you will have fewer and fewer Cpn bacteria to kill.

Q. Why is my urine a strange colour at times?

A. Your urine reflects food, medication and supplements that you swallow.

  • YELLOW as a result of taking Vitamin B complex
  • GREEN sometimes as a result of eating certain green vegetables, or NAC.
  • BROWN/PURPLE often happens during Flagyl pulses especially at the beginning of treatment, can be a sign of porphyria. People who are at the end of their treatment report that their urine is clear when taking Flagyl. This suggests that it is not the medication producing the brown colouration but the porphyrin by products in your system.
  • ORANGE/RED as a result of taking Rifampin

Q. I started on Doxycycline and Azithromycin and don't notice any reactions.

A. Not everyone will get reactions to either or both of these two. They are mostly anti-replicative antibiotics and therefore do not kill many Cpn bacteria, so not many toxins get released into your blood stream and you feel OK. These drugs can also kill other organisms and people who get strong reactions may be killing other stuff as well as a few Cpn bacteria. Alternatively, people who are very sick are very sensitive to any change in their bodies and can be quite ill with even minimal added toxin levels.

Q. I always get thrush when taking antibiotics, can I prevent it?

A. Some people seem more prone to thrush (Candida Albicans) than others. A good regimen of probiotics and antifungals usually keeps the problem under control. Here are a few supplements that might help: S Boulardi, Tanalbit, Kolorex, Caprylic acid, Acidophilus, Kefir (a yoghurt like drink), Yaeyama Chlorella, turmeric etc. Additionally your doctor can prescribe flucanozole to take if the problem is serious. In my experience Flagyl is very good at beating back Candida, and I would always follow a pulse with a vigorous anti candida regimen.

Q. What is the difference between side effects of the drugs and die off symptoms and how can I know if I am allergic or just getting die off effects?

A. If your symptoms match those described in the reactions page then you can be pretty sure that you are suffering from die off effects. Many commonly reported side effects to antibiotics, we speculate, could in fact be Cpn die off, although because people are unaware that they have a Cpn infection it could easily be attributed to an allergy. We have repeatedly heard it said here that people who were ‘allergic’ to antibiotics no longer are when they have been on the CAP for a couple of months. People who are very sick in the beginning of treatment should be careful when starting the antibiotic to start slowly so as not to overwhelm their system.

Questions answered elsewhere

Q. NAC flu - what are the symptoms? I'm feeling nauseous what can I do? I have constipation or diarrhoea? What is porphyria, what can I do about it?

A. Look in the Reactions page

Schedule Questions

Q. Do I take the antibiotics twice a day or can I take them together in one go?

A. In the beginning it would be prudent to take the antibiotics separately, twice or three times a day. When you have become accustomed to taking them and can monitor your reactions effectively then you can take your antibiotics in one dose. Some people would argue that you get a better coverage by taking it twice a day. But the difference would probably not be too great.

Q. There are so many pills to take, can you help me with some examples of what to take when?

A. Here is a thread which gives a couple of schedules used by some of our members to space out their medications and supplements. Your lifestyle will dictate the timing of your medication to a certain extent. It is important to keep Calcium/Magnesium separated by at least two hours from Doxycycline. Don’t take acidophilus at the same time as antibiotics, before bed might be a good time. Charcoal is like a sponge: it will absorb anything it comes into contact with, so it is best taken several hours away from other medication. Quite a few people have it ready by the side of their bed and take it in the middle of the night.

Treatment questions

Q. When will my treatment end?

A. This is a difficult question to answer as each person will be different. Expect the treatment to last months and years, rather than days and weeks. Some indication that you are nearing the end of the treatment would be when you no longer get reactions from Flagyl or Tinidazole and your urine is no longer brown/purple during a pulse of these antibiotics. You may wish to go on an intermittent protocol at that point for up to a year, or do a trial of more potent anti-chlamydials to 'test' your lack of reactivity.

Q. Can I take painkillers while on this treatment?

A. Yes.

Q. Am I allowed to drink alcohol?

A. After a few months of treatment an occasional drink won’t harm, but initially I would say it was inadvisable. It is particularly contra-indicated when taking Flagyl or Tinidazole as it could make you feel sick and even make you vomit.

Q. Can I go out in the sun?

A. When you first start taking Doxycycline you must stay in the shade, cover up or use very strong sun block or you will end up looking like a beetroot and the colour will not disappear for weeks. It is not like ordinary sunburn, and although the sting will disappear in a couple of days the colour will not. After a few months of treatment the problem seems to abate somewhat but take care all the same. Some people get less sun sensitive over the course of the treatment as photoreactive porphyrins that have built up in the skin are diminished.

Q. How do I get diagnosed?

A. One way to tell if you have a Cpn infection is to do the NAC (N-Acetyl Cysteine) test. NAC kill the Elementary Bodies (EBs) stage of Cpn. If you have reactions such as sneezing, maybe itchy eyes and a sore throat, then you are most likely suffering from a Cpn infection. NAC is an otherwise benign agent, that to our knowledge, only produces these kinds of reactions to Cpn. If you don't have a reaction to NAC that may be because you don't have a high EB load. So it's not an absolute indicator.

Q. What tests can determine if I have Cpn and can distinguish a latent from an active infection?

A. Cpn is difficult to detect. Dr Stratton recommends a serologist test as being most consistent in detecting Cpn. In the US Mayo labs and Quest labs seem to have to most consistent results. The main indicator for a persistent Cpn infection is elevated IGG levels. Most physicians will inaccurately call this elevation an indicator of past Cpn infection and not meaningful, but Dr Stratton notes that the body conserves proteins it does not immediately need and if titres are elevated, the body is dealing with chronic exposure to Cpn from persistent infection.

Q. What is brain fog?

A. Brain fog is what we call the feeling of not being able to understand quite what is going on, losing the ability to concentrate, making rational decisions, answering questions, making choices. Many patients report this feeling before beginning the treatment, describing themselves as feeling stupid or having lost their ability to remember things. Luckily this is one of the first things to recover once you have started the antibiotic protocol, although at times you may find that it comes back to haunt you for short periods of time, especially when pulsing the Flagyl. Give yourself time, be patient and know that this will get better.

Michèle Sat, 2008-04-26 04:49