Eventually we hope to have more detailed discussions of:
An excerpt here from David Wheldoni [3]'s book review of "The Potbelly Syndrome" where David describes some of the difficulty doctors have looking for occult infectionsi [4], and a page on his website where he discusses the difficulty doctors have going against what has been so ingrained in them in training.
Excerpt from http://www.cpnhelp.org/?q=book_review [5]
And for years people have looked for infections in these chronic illnesses without success. It is forty years since Chl pneumoniae was discovered, and, as the author says, hospital consultants do, by and large, have little understanding of this organism. I can vouch for this. I was speaking to a colleague, a consultant medical microbiologist, who politely asked me my interest within the subject. 'The treatment of chronic infections with Chl pneumoniae.' 'Oh, I never see infections with that!' To which the answer is 'You don't look.' Charles Strattoni [6]i [7], a medical microbiologist at Vanderbilt University, and a member of the team who first discovered the presence - by culture as well as the detection of specific gene-sequences - of Chl pneumoniae in the CSF of people with MSi [8], believes that method is all important, with fastidious attention to detail and, in the case of culture, repeated centrifugation and prolonged incubation. Doctors are inclined to show undue credulity when it comes to negative laboratory findings. Saying 'we didn't find it so it's not there' is, after all, not that much different from saying 'you claim there is a needle in that haystack; I've spent a whole ten minutes looking for it without finding it so it's not there.'
David Wheldon's "The Curate's Egg" http://www.davidwheldon.co.uk/peer-review.html [9]
For those not anglophiles, the phrase means:
"Something bad that is called good out of politeness or timidity."
Origin
The origin of the phrase, the George du Maurier cartoon - "True Humility", printed in the magazine Punch, 9th November 1895, gives fuller insight into its meaning, which relies to some extent on an appreciation of irony.
[10]
Jim,
This is a sample letter my Husband and I sent my doctor when discussing treatment of abxi [11] for MSi [2]. We thought you could post it somewhere here for others that need to write letters to their doctors.
We think it really helped.
Dr. {xxxxxx},
I deeply appreciate your willingness to consider supervising me on a long-term, lose dose combination antibiotic regimen to treat my multiple sclerosis diagnosis. I understand that this protocol is non-conventional, unproven, and is not without risks, including immediate or long-term serious adverse events from antibiotic use.
In spite of MS drug companies’ aggressive marketing messages, the published data show that the conventional disease modifying therapies provide minimal impact on disease progression. While waiting for the announcement of a miracle drug that works I have actively searched for promising alternative therapies for over {N} years. During this time I have learned to become very skeptical of the dozens of alternative theories and therapies I have come across. I have proceeded with caution and have tried a limited number of alternative therapies with some encouraging but limited results.
The relapsing/remitting nature of MS and randomness of disease progression makes objective measurement of therapies difficult. The stress relief, endorphin impact, and other placebo phenomenon’s also make evaluation challenging. My understanding of these factors makes me leery of pure anecdotal testimonies, especially where someone has a profit motivation.
From my readings most MS researchers believe that they are dealing with an immunei [12] disorder. Others believe the immune system attacking the myelini [13] sheath is a symptom of some other underlying cause of MS. Unfortunately no one has yet discovered the root cause. Persons are diagnosed with MS because of common symptoms and examination findings but there is convincing arguments that MS suffers as a whole may consist of sub-groups with different underlying causes such that certain therapies may be more effective for certain subsets.
As you well know some bacterial and viral infectionsi [4] share many of the same symptoms as MS. I understand that I don’t have laboratory evidence of any current measurable infection requiring antibiotics. I have read theories suggesting that some infections, especially long-term infections, may not be accurately detected by conventional lab tests. The specific protocol I am asking you to supervise was specifically created to eradicate a CPNi [1] bacterial infection. But this protocol is similar to that used to eradicate other infections as well. Proof or identification of a specific infection is not my ultimate objective. I am interested in empirically discovering if I can experience any disease progression reversal by use of antibiotics.
During a prior appointment with you I first mentioned my interest in trying an antibiotic regimen. I subsequently began taking several probiotic supplementsi [14] in preparation for beginning antibiotic therapy. I would now like to start the antibiotic regimen. In my last appointment you proposed alternating monthly the use of doxycycline and azithromycin. But since, after further investigation, I read the importance of not cycling the doxycycline and azithromycin but after 3-4 weeks of starting doxycycline I should add azithromycin and take the two in combination.
Apparently the cyclical long-term stopping and starting use of the individual antibiotics will promote resistance rendering each ineffective. Also, the protocol works four times more effectively by using both antibiotics in combination because of their synergistic effect. Each antibiotic targets different steps in the bacterial protein synthesis pathway. Their primary effect is not to directly kill bacteria but instead to diffuse their ability to replicate. Apparently, the resistance is created thru replication (birthing) of new forms. By disarming the replication ability in multiple forms the ability to create resistance is dampened.
The later addition of the short pulse usage of Flagyl is used to actually kill off existing bacteria.
If all goes well the ideal regimen plan I hope to follow is:
I would like to start 200mg doxycycline immediately. I am writing to you now to request that you consider allowing me to take the antibiotics regimen, and follow the concurrent combination, instead of cycling. I only have 1 chance to do it right the first time. I do not want to create antibiotic resistance unnecessarily.
I am going to get the blood work done as planned later this month and then make an appointment to further discuss this treatment plan in person with you.
Dr. David Wheldoni [3] in the United Kingdom is the developer of this specific protocol. If you have any concerns or questions with the concurrent use of the antibiotic’s or anything else with the regimen I would be glad to facilitate arranging correspondence or teleconference with him.
Thank you again for helping me trial this therapy.
Sincerely,
{Xxxxxx Xxxxxxxxx}
Your name
Your address
Date
__________________, MD
Street address
City, State, Zip code
Phone number
Dr. _______,
I appreciate your willingness to consider supervising me on a Combined Antibiotic Protocol to treat my (………………….), as an expression of a persistent Chlamydia Pneumoniae (Cpni [1]) infection. I understand that this protocol is not conventional, and as with any medication, some negative effects could occur, however, there is compelling evidence to suggest that Cpn may be implicated in my condition.
There is also evidence suggesting that lab tests to detect a Cpn infection are not definitive and somewhat limited. These lab tests are most accurate in showing positive results in the event of a current infection. Chronic infectionsi [4] may not produce positive lab results due to the obligate intracellulari [16] nature of the reticulate body and cryptic life stage of persistent Cpn. Cryptic Cpn will convert back to reticulate bodies when conditions are favorable for its replication and further infection in the body.
The specific protocol I am asking you to supervise was created to eradicate a Cpn infection but may eradicate other bacterial infections as well. Proof or identification of a specific infection is not my ultimate objective. I would like to try this treatment empirically to see if I can halt the progression of my condition. A document is enclosed which outlines an example of the protocol and basic information about the Cpn lifecycle and the specific aspects needed for its successful treatment.
Because of these specific circumstances surrounding the life cycle of this bacteria, stopping and starting short courses of a single antibiotic will promote bacterial resistance rendering the antibioticsi [11] ineffective. Using antibiotics in combination has the added advantage of a synergetic effect on the bacterium that inhibits the development of resistance and renders them more effective. A key point in the successful treatment of this obligate intracellular bacterial infection is that the duration of treatment should be sufficient to eradicate all of the life phases.
I am hoping you will be willing to supervise my progress and provide oversight and treatment for any related concerns as we co-operate to improve my health.
I can provide you with contact details for the doctors who have been responsible for the research into Cpn and the development of this protocol, should you want to consult them.
Thank you again for your willingness to consider helping me in trialing this therapy for Cpn. I hope that we can engage in a co-operative relationship with the aim of improving my health.
Sincerely,
At this time, we do not have a list of physicians who prescribe a long term combined antibiotic protocol (CAPi [17]), and our policy is to maintain the public anonymity of those CAP doctors who have not made themselves public. Please do not e-mail requests for a list or a referral on the "feedback" link. We offer the following strategies and considerations, though, to help you find a doctor to treat you on the protocol.
One strategy is to try the doctors you already know. For this angle, you should prepare yourself. Understand that the doctor might be unfamiliar with the concept. It’s a plus if the doctor senses that you have a firm grasp of the concept yourself. Here’s a little "cheat sheet" on the critical points:
1. Chlamydia pneumoniae (Cpni [1]) is also known by its newer name of Chlamydophila pneumoniae. It is an intracellulari [16] pathogen, that is, the infection is inside your cells.
2. Cpn has three main life cycle phases:
3. Chlamydia pneumoniae is persistent. The reticulate form is the phase that attracts the most attention from your immune system and, ultimately, its presence is the trigger that results in most of the "collateral damage" heaped on the surrounding tissues by the immune response. Threatened by bacteriostatic antibiotics, it can convert to the cryptic form to protect itself. When the threat is gone, it converts back to the reticulate form and continues to reproduce and spark the damage.
4. Only a long term combined antibiotic protocol effectively and safely kills Cpn in all three phases.
5. It is necessary that the protocol be a long, gradual kill-off of Cpn in order to avoid too much apoptosis (natural cell deathi [18]) at once. Natural cell death and replacement is an ongoing process occurring in the bodies of everyone, well and unwell alike. Cpn has developed the ability to keep host cells alive for an artificially long time. When Cpn is killed inside the host cell, the "immortalizing" effect goes away, and the host cell dies as it should have done already. If the whole arsenal, that is the full complement of the combined antibiotics, were hurled at the Cpn population from the beginning of the treatment, too many host cells would die at one time…this could cause organ failure. The protocol employs a gradual ramping-up of the antibiotics which brings about a gradual winnowing-down of the Cpn population. This approach makes the protocol comparatively safe.
6. Cpn infects immune system cells themselves. As more ineffectual immune cells die-off and get replaced with non-infected cells, the immune system progressively improves and behaves more normally.
7. A steady pattern of consistent improvement should not be expected. A pattern of ups and downs, two steps forward/one step back is more likely.
Your doctor may have specific medical concerns---make sure you understand the gravity of the concerns and how the protocol addresses them. These are the main concerns:
1. Development of bacterial resistance~~~The combination of the antibiotics in the protocol prevents this by attacking Cpn in more than just one way. Here [19]is a helpful article by Dr. Charles Strattoni of Vanderbilt University on the subject.
2. Potential damage to the liver and other organs~~~The recommended supplementsi [20] and the gradual approach of the protocol help to prevent damage. Monitoring through appropriate blood testing is recommended.
3. The potential consequences of gut flora disruption~~~The recommended supplements include antifungals and multi-strain probiotics to forestall these potentialities:
4. Secondary porphyria may be a symptom that is already happening if your liver is infected with Cpn. Antibiotic treatment may exacerbate this problem~~~Avoiding red meats and trans-fat consumption and increasing complex carbohydrate consumption are helpful. Another method of control is taking glucose tablets before eating. For more severe cases, propanolol and other medications are discussed on the website.
5. Bacterial die-off reactions are no walk in the park. This is caused by the release of endotoxins from the Cpn that have been killed~~~The symptoms are manageable. Some of the most effective ways to limit these reactions are by supplementing extra vitamin C and activated charcoal, using vitamin C flushes, taking Epsom salts baths, and drinking plenty of water. Maintaining bowel regularity is helpful, as a quicker elimination of the endotoxins from the gut lessens their reabsorption.
Bring documentation to the appointment, but don’t shove too much paper in your doctor’s face at once:
1. A letter similar to the sample letter in the Cpn Handbook. It should reflect that you understand the concept of the CAP; the risks; the responsibility you accept in proactively taking measures to forestall the risks; and the responsibility you bear in seeking help to manage those potentialities in the event they should arise and warrant medical attention.
2. A copy of the Cpn Handbook bound in a notebook for later reference.
3. Tuck some supporting research articles into the notebook pocket. Those with MSi [2] would do well to include the critical sections from Dr. David Wheldon's website [21]. Your doctor may appreciate his concise protocol presentation.
4. The opinion of an uninvolved physician can be found here [22].
Don’t discuss this subject with the doctor, but do understand that there is an element of risk for the doctor in treating you with a CAP. Weigh the possible benefit of long term CAP treatment against continued use of other treatments and progression of your illness. Decide if you are willing to sign a waiver for the doctor and be prepared to make that offer if you are committed to pursuing a CAP treatment. Receiving this treatment requires that you be an informed patient and accept a degree of responsibility beyond what your previous medical experiences might have required. Incorporate this new way of thinking into your pursuit of effective treatment.
You might consider doctors other than those who specialize in your illness like your primary care physician: a general practitioner or internist. You may find that an osteopath or an MD with alternative medicine leanings is more receptive to a CAP.
Try a "Lyme literate" doctor who is already familiar with long term antibiotic treatments.
Another approach is to seek a doctor who is already treating one of our site users. Make a personal blog entry asking for help with a title that includes your location and illness. Be flexible and willing to travel a distance that you can manage.
One site user, Ken H, was successful in using a truly unique approach: target an assembled group of doctors and see who’s game.
Best wishes and Godspeed to you.
Some additional strategies that people have used:
Information for doctors
Treating Cpni [1].
Chlamidophila Pneumoniae (Cpn – formerly known as Chlamydia Pneumoniae) is an obligate intracellulari [16] pathogen which has three life phases. This makes it particularly difficult to diagnose and treat. The only phase of the organism easily identified in blood samples is the Elementary Bodyi [26] phase. The Reticulate Body phase and the Cryptic phase are more difficult to identify as the organism resides within the cell, preventing apoptosisi [18] and having the ability to take advantage of suitable conditions for reproduction and further spreading infection. The problem is compounded by the fact that macrophages are often themselves infected and transport the bacterium to new sites in the body.
Cpn, being a vascular diseasei [27] has been implicated in a wide range of conditions ranging from Asthmai [28] to Vasculitisi [29], and including Alzheimer’s, Arthritis, Atherosclerosis, CFSi [30], Fibromyalgiai [23], Hashimoto’s Thyroiditis, MS, Sinusitis etc and displaying a myriad of symptoms.
A simple course of antibioticsi [11] will not address the problem; thus a Combined Antibiotic Protocol along the line of the protocol used to treat TB is necessary, and as for TB the treatment is likely to take months and years rather than days and weeks.
Doctors and scientists led by Dr C Stratton at Vanderbilt University researched the action of a number of antibiotics on Cpn and together with Dr D Wheldon (a British consultant microbiologist) formulated the following protocol:
| Antibiotic | Dosage | When taken | Notes |
| Doxycycline | 100mg | QD | Take this alone until well tolerated. |
| Azithromycin or Roxithromycin | 250mg 150mg | Mon, Wed, Fri BID | Add either one or the other of these to 100mg doxycycline |
| Doxycycline | 100mg | BID | When both the above are well tolerated add another 100mg of doxycycline |
| Metronidazolei [15] pulse, also called Flagyl.
An alternative is Tinidazole | 400mg or 500mg depending on dose available in your country. 500mg | TID
BID | 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. |
The dying bacteria produce endotoxinsi [31] and may cause secondary porphyriai [32] which can make patients quite unwell so, initially, it is important to pace the treatment. Metronidazole or Tinidazole are only taken for 5 days in each three or four week cycle to allow the patient to recover from die off effects.
This is only one of several solutions to the treatment of Cpn, but possibly the easiest to administrate and follow. There are other protocolsi [33] that can be prescribed after the initial period of treatment. For more information on the research that has been done, patients’ experiences and the other protocols please visit: www.cpnhelp.org [34]. This site also provides support for patients and publishes updated information on research and new protocols.
Select out the most relevant sections of the Handbook, as well as a couple of the research sources, so your doc has the medical rationale but isn't overwhelmed with info.
If this is for MSi [2], start with the main page materials from David Wheldon's site. [35]
Add selected material from the Cpni [1] Handbook from these:
Then these, add specific articles on your particular disease from the research pages:
Two or three supporting articles I would add from (be selective to fit your doc) our Physicians Page:
Print the pdfs from these (worth printing in color):
Chronic bacterial infections: living with unwanted guests [37]
Potential Role of Infections in Chronic Inflammatory Diseases [38]
If your doc needs more detail I would go right to the Mitchell Stratton patent materials and print the whole thing as it describes all the detailed lab work.
Even better, Dr. Stratton has been generous about phone consults with doctors interested in using the protocol. Look up his number on the Vanderbilt U website and give to your doctor. It's the best thing if doc to doc they can talk to the worlds expert on this.
I would hold off all the other materials until you had a decision about treatment, as these are additional rather than supporting the "Why do a CAP" question.
Also from the handbook:
The rejecting attitudes of many doctors, family members, friends, marital partners and others to long-term or "untreatable" illnesses such as MSi [2], Lupus, CFIDSi [39], Fibromyalgiai [23] are a common experience for sufferers. Many people say that simply finding this web-site, and people who take them seriously and believe them, is one of the great moments of healing for them. There is so much to say about this topic and the reasons for these attitudes. I'm a psychologist, and understand the social and psychological dynamics which enter into such poor treatment of the ill by the "well." Understanding helps, but I am still subject to the hurt and blame, and I too need the support of others who take me seriously and can share their difficulties and triumphs.
The following thread has a long and heartfelt discussion of this, with many examples of the ways people have been rejected and mistreated by those who should support them most, family members. It is titled "Isolation," but I assure you that you will not feel alone as you read it. I recommend it as highly therapeutic.
Links:
[1] http://www.cpnhelp.org/glossary/term/167
[2] http://www.cpnhelp.org/taxonomy/term/6
[3] http://www.cpnhelp.org/taxonomy/term/36
[4] http://www.cpnhelp.org/taxonomy/term/58
[5] http://www.cpnhelp.org/?q=book_review
[6] http://www.cpnhelp.org/taxonomy/term/37
[7] http://www.cpnhelp.org/?q=glossary/term/37
[8] http://www.cpnhelp.org/?q=glossary/term/6
[9] http://www.davidwheldon.co.uk/peer-review.html
[10] http://www.cpnhelp.org/?q=the_curates_egg
[11] http://www.cpnhelp.org/taxonomy/term/38
[12] http://www.cpnhelp.org/taxonomy/term/64
[13] http://www.cpnhelp.org/glossary/term/100
[14] http://www.cpnhelp.org/taxonomy/term/63
[15] http://www.cpnhelp.org/taxonomy/term/44
[16] http://www.cpnhelp.org/glossary/term/114
[17] http://www.cpnhelp.org/glossary/term/168
[18] http://www.cpnhelp.org/glossary/term/88
[19] http://www.cdc.gov/ncidod/EID/vol9no1/02-0172.htm
[20] http://www.cpnhelp.org/taxonomy/term/57
[21] http://www.davidwheldon.co.uk/ms-treatment
[22] http://drmirkin.com/morehealth/G221.html
[23] http://www.cpnhelp.org/taxonomy/term/24
[24] http://www.co-cure.org/Good-Doc.htm
[25] http://www.cpnhelp.org/taxonomy/term/34
[26] http://www.cpnhelp.org/taxonomy/term/46
[27] http://www.cpnhelp.org/taxonomy/term/29
[28] http://www.cpnhelp.org/taxonomy/term/11
[29] http://www.cpnhelp.org/glossary/term/98
[30] http://www.cpnhelp.org/glossary/term/163
[31] http://www.cpnhelp.org/taxonomy/term/26
[32] http://www.cpnhelp.org/taxonomy/term/28
[33] http://www.cpnhelp.org/taxonomy/term/35
[34] http://www.cpnhelp.org
[35] http://www.davidwheldon.co.uk/ms-treatment.html
[36] http://www.cpnhelp.org/taxonomy/term/56
[37] http://www.nature.com/ni/journal/v3/n11/abs/ni1102-1026.html
[38] http://www.asm.org/ASM/files/ccLibraryFiles/Filename/000000001887/znw01105000529.pdf
[39] http://www.cpnhelp.org/glossary/term/164
[40] http://www.cpnhelp.org/?q=isolation