This Is MS Multiple Sclerosis Knowledge & Support Community

Ken -

Glad the information and our experience with Novantrone and CAP helps.
I will be glad to answer any other questions that I can for you and Kim.

By the way, on a personal note, while I am not a doctor, I have worked for the past twenty years in Anti-infectives, Anti-virals and Immunology and I have in the course of my husband's illness rigorously reviewed the science of not only CPN infection of the CNS but also infections by other gram negative/cell wall deficient/stealth pathogens. The interesting thing about a CAP protocol is that you have a reasonably good chance of having a positive effect/outcome on most of these gram neg's that have been potentially implicated.

Personally, I am reasonably convinced that a pathogen is at work, especially when you begin to step outside of the MS world and look at other so called "auto-immune" diseases in which I have worked and researched including Rheumatoid Arthritis, Crohn's, Psoriasis, Asthma, Scleroderma, etc... There seems to be an interesting body of evidence that in each of these diseases there is a pathogen at work. When you begin to combine the infective agent data from across multiple so called "auto-immune" diseases it starts to get pretty eye opening.

I think your post above says it all - compared to Novantrone taking garden variety oral antibiotics is pretty innocuous. Your potential downside from Novantrone is rather serious vs your potential downside from an antibiotic cocktail.

At the very minimum, there is strong suggestion in the medical literature, across the so-called "autoimmune" diseases, that antibiotics exert an immunomodulatory effect including at least a few studies in MS.

Now an immunomodulatory effect, at least to me, from antibiotics is safer than an immunomodulatory effect from many of the MS treatments especially Novantrone, IV steriods, interferon, etc... If you reliabily take good qualty probiotics in generous amounts, the main negative sequelae of long term antibiotic cocktails - clostrium diff. can be generally avoided.

In my humble opinion and in most simple terms, you have very little to possibly lose by trying CAP and everything to possibly gain.

Replies

Dovechick I definitely have an appreciation for your ideas. Thank you for the link. The idea of a genetic pre-disposition is interesting and I hope we get more info about this in the future. You’ll see below that I’m shooting for a pretty direct understanding of the theory for CPn. Perhaps you know where the articles are that fill in the holes?

Katman Thank you. We are already on NAC and most of the others. We may need to refine the list soon.

MacKintosh Sorry about the misunderstanding about Copaxone. You’ll see below that I’m working on getting the CPn/MS link simplified. Thank you for getting me started on the key point about collateral damage. I’ve also included the Wheldon Protocol as you have suggested, see below.

Anecdote Thank you for the articles, as you can see below I’ve incorporated one of them in the notebook. I’m working towards getting on the phone with Dr. Stratton and Dr. Sriram. I’ll also e-mail David. But first, I want to exhaust all possibility of finding answers on my own (this was actually one of your original recommendations to me, which I very much appreciate and have obviously been running with). I want to have good questions for these doctors when I contact them. I will of course post the answers here.

daisy Thank you for a very reinforcing post. Kim came out of Novantrone “fog” within 10 days and she’s feeling more herself now.

Putting the Steps in Order

I’ve been reading, a lot. I found Dr. Subramaniam Sriram’s “Who am I” page on the Vanderbilt University website. I get the impression that he’s very persistent. His list of publications went on for 3 pages and I printed up all the abstracts I could click. Reading though this stuff you get the feeling that he knows exactly what MS is and he’s just trying to figure out how to demonstrate it for the rest of the world to see. The Granddaddio of all of them is an article he and Dr. Charles Stratton published back in 1999, “Chlamydia pneumoniae Infection of the Central Nervous System in Multiple Sclerosis”. This article effectively says that lots of folks with MS also have the CPn bacteria and the prevalence of the bacteria in folks with MS is significantly greater than average. This article closes with the following speculation:

“C. pneumoniae is known to infect macrophages and monocytes as well as endothelial and smooth muscle cells of blood vessels. This pathogen thus could be transported to inflamed CNS tissues by infected monocytes/macrophages that were responding to an initial triggering event. This triggering event could be an acute viral infection or autoimmune reaction”

For me this was a good start. I can comprehend the idea that CPn can infect cells that are gaining access to the CNS. I also get the sense that this process of the CPn infected cells getting in the CNS requires several hurdles, which suggests to me that there are reasons why everyone who gets CPn doesn’t get MS.

Skipping ahead to 2005, Drs. Sriram, Ljunggren-Rose, Yao and Whetsell published an article, “Detection of chlamydial bodies and antigens in the central nervous system of patients with multiple sclerosis”. This article also closes with a speculation about the relationship between CPn and myelin loss:

”The studies presented here, along with our previous PCR studies of the presence of C. pneumoniae DNA in CSF from a subset of MS cases, suggest an association between this pathogen and disease. These studies do not provide evidence of a causal role between C. pneumoniae infection and MS; however, chlamydial antigens may be an infectious "trigger" that initiates or leads to autoimmunity. Molecular mimicry between C. pneumoniae antigens and myelin antigens has been recognized; immunization of animals with these cross-reactive antigens is sufficient to induce autoimmune disease [53, 54]. Alternatively, the infection may act as a secondary invader in host tissue, accentuating an ongoing inflammatory response [55].

I honestly want to understand this. I don’t. I’ve linked the references if anyone can explain to me in English what this is saying.

Now skipping ahead to 2006, Dr. Charles Stratton and Dr. David Wheldon published an article titled, “Multiple sclerosis: an infectious syndrome involving Chlamydophila pneumoniae”. This article closes with the following thought:

The direct infection of oligodendrocytes by C. pneumoniae is a possible infectious trigger for MS. C. pneumoniae infection of microglial cells could also result in the death of oligodendrocytes through interferon gama.

There’s a part of the article that I think is explaining this last quote. It says:

Chronic infection with C. pneumoniae might therefore simultaneously prevent apoptosis in infected host cells (by the bacterial overexpression of hsp) . The cytokine interferon gamma initiates oligodendrocyte apoptosis in vitro and high levels of might be the final stress that brings about oligodendrocyte death in the acute MS lesion.

I sorta think I understand this, but I don’t completely follow the sequence of events. Please help make this clear. I’m looking to fill in the gaps:

1) Monocytes and Macrophages can be infected with CPn
2) Infected Monocytes and Macrophages can cross the BBB and gain entry to the CNS
3) Step(s) that go here in sequence are unclear
4) Microglial cells that are already in the CNS become infected with CPn
5)Step(s) that go here in sequence are unclear – but something causes more IFN Gamma to be expressed
6) Excessive amounts of IFN Gamma causes oligodendrocyte death
7) Step(s) that go here in sequence are unclear
8) Myelin loss occurs

I completely understand that this is a theory, but a good theory has a logic to it and I’m certain that Dr. Stratton and Dr. Wheldon know exactly how to explain this but I simply can’t fill in the blanks. I want to be clear, I’m not being skeptical here, I’m just lacking in being able to fully comprehend what I am reading.

I’d be thrilled if someone could help me get this sequence complete and in English and a super bonus would be links to articles that support the explanation. I will come back and edit in the links.

Ok, one better, if we can complete this chronology with links to journal articles, I’ll create a post that assembles the whole thing in one single post. I think such a post would be enormously helpful for folks. What-cha-think?

The Notebook – Update

I’m assembling 2 notebooks. The doctor Kim and I are planning to ask about this is married to one of Kim’s best friends. I think it would be good to give them each a notebook. This is the draft idea of what I’m planning to give them.

Not So Medical Notebook

1) The Reporter: Pneumonia, MS Link Investigated
2) The Reporter: Chlamydia Pneumoniae nt Caught Like You Thought
3) Notdoneyet’s Treatment of MS for CPn Story
4) Mrhodes40 – My story

More So Medical Notebook

1) Empirical Antibacterial Treatment of Infection with Chlamydophila pneumoniae in Multiple Sclerosis
2) Chlamydia pneumoniae and MS: Questions and Answers
3) Multiple sclerosis: an infectious syndrome involving Chlamydophila pneumoniae
4) Chlamydia pneumoniae Infection of the Central Nervous System in Multiple Sclerosis.
5) Minocycline Reduces Gadolinium-Enhancing Magnetic Resonance Imaging Lesions in Multiple Sclerosis
6) Detection of Chlamydial Bodies and Antigens in the Central Nervous System of Patients with Multiple Sclerosis
7) Wheldon Protocol
8) Some Answers to Concerns About Long-Term Antibiotics
9) The Brain and Pathogenic Treatment
10) Multiple Sclerosis and the CPn Model
11) Smoking Guns, Cellular Similarities Between CPn Cellular Reactions and MS

How’s that? Thinking about adding something to round it out to an even dozen. The goal is to provide enough info without overwhelming the doctor. I want to start out with David’s material because it’s written by a doctor, yet easy to read. Then articles from journals to support the ideas. Then the protocol so he can see how all this becomes a regime. Closing with other supporting info that also can show that there is an entire website devoted to CPn. I’m open to changing anything – this is a draft.

Asking for help in a way that helps others, Ken

I was going to send you 'Smoking Guns', which I found to be a clear, concise and understandable explanation (to non-medical-minded me), but I see you've found it. If I were to give someone three things to educate them about cpn infection, that would be one, David Wheldon's pdf would be another and Katman's patient story would be another. They are all clear and compelling (though I must admit, two years ago it was Sarah's story that drove me forward to the abx protocol).

Knowing the abx would not hurt me and likely would help me made the decision an easy one. In ten years, doctors will simply prescribe this protocol and will advise their patients there will be some difficult patches as they return to health. "Call me if you're really worried" will be about all they say as they make the next appointment for thirty days later to monitor liver health. And, thank God, what we are all going through right now will be moot. You're both in my thoughts.

Truth be known there are several steps that are still not clear to these great minds who have brought us this far. We are talking here about a pathogen that was only recently discovered because of its secretive ways.
I am not one of these great minds that can take us forward further, maybe you are.
I am certainly interested in the chain of events that leads us to MS, but it could be more than one pathogen plus a combinations of physiological lacks or missing triggers or even under active processes.

It was sufficient for me that the research was logical and provided an explanation for otherwise incomprehensible attacks on the myelin sheath, especially those that were triggered by some kind of health event, and even more important suggested an empirical treatment that would give my daughter a chance.
No guarantees, but the risk of treatment were smaller than the risk of doing nothing....

Ken, That would be the Ella who was in dire straits in hospital a year and a half ago, who jumped out of a perfectly good airplane yesterday to raise awareness for MS and show how antibiotics brought her back from the brink.

Sorry, Ken, I'm typing this with one hand due to a bad wrist strain, but yes, as Mac says, Ella would make it a round dozen, especially if Michele manages to resurrect the 2006 photo of her. See more on CPn Help in the images section!

Sarah

I've not worked out how to uploaded an image on this site so here is the link to it on CPn Help
Ella just out of hospital where she had been for two months... and Ella now preparing to jump out of an aeroplane.
CPn Help/ellas_progress_0

The Notebooks

Thank you everyone for your thoughts and suggestions. Since my last post here, I’ve signed up at CPn Help and I’ve invented a new acronym HAT, Historically Accepted Treatment. I’ve updated and printed up a copy of the Not So Medical Notebook as follows:

1) The Reporter: Pneumonia, MS Link Investigated
2) The Reporter: Chlamydia Pneumoniae not Caught Like You Thought
3) Rica’s Story – Won’t Let MS Get Her Goat!
4) Notdoneyet’s Treatment of MS for CPn Story
5) Marie’s Patient Story

I think it’s important to have two types of notebooks on this. In this case we are giving this notebook to Kim’s friend. I’ve added Rica’s story, it is very compelling and full of energy! Kim also has an expressive energy and genuineness about her we fondly refer to as “Kimmishness”. The second notebook is for the husband of Kim’s friend who is a doctor. The Moreso Medical Notebook is as follows:

1) Empirical Antibacterial Treatment of Infection with Chlamydophila pneumoniae in Multiple Sclerosis
2) Chlamydia pneumoniae and MS: Questions and Answers
3) Multiple sclerosis: an infectious syndrome involving Chlamydophila pneumoniae
4) Chlamydia pneumoniae Infection of the Central Nervous System in Multiple Sclerosis.
5) Minocycline Reduces Gadolinium-Enhancing Magnetic Resonance Imaging Lesions in Multiple Sclerosis
6) Detection of Chlamydial Bodies and Antigens in the Central Nervous System of Patients with Multiple Sclerosis
7) Chlamydia pneumoniae infection of microglial cells in vitro: a model of microbial infection for neurological disease
8) Wheldon Protocol
9) Some Answers to Concerns About Long-Term Antibiotics
10) The Brain and Pathogenic Treatment
11) Multiple Sclerosis and the CPn Model
12) Smoking Guns, Cellular Similarities Between CPn Cellular Reactions and MS

I’ve added #7 above. It’s a really nice. I mean not nice, but a good article. Unlike other articles, this one actually demonstrates that Chlamydia pneumoniae can infect and replicate within microglial cells. It has taken me a long time to put this together. I post this here to hopefully help others get from point “A” to point “B” in the most direct fashion. I also advise folks to READ the material. You don’t have to “get” all of it, but you need to get the overall idea. It’s worth the investment of time to avoid getting embarrassed when your doctor asks you questions and it becomes clear that you don’t know about the therapy you’re asking your doctor to endorse.

I am concerned that the book might be too much. I acknowledge that there are obsessive qualities I bring to this. I’ll report back here what happens.

Putting the Steps in Order

First off I found a pretty good article by Lawrence Steinman that explained the term “Molecular Mimicry” in the context of MS. I’m pretty sure that I saw an article by Dr. Sriram that mentioned molecular mimicry as part of a theoretical pathogenesis, but I can’t find it right now. In any case here is a quote and link for Steinman:

”In the context of MS, many microbial protein sequences share homologies with structures found on the myelin sheath; this leads to an attack on myelin via a process called molecular mimicry.”

So there are a few theories here to look into:

1) CPn and myelin might share similar protein sequences which could cause an immune response to CPn to also cause collateral damage to myelin.
2) CPn might directly infect oligodendrocytes which may cause weakening and loss of myelin
3) The immune systems efforts to fight CPn may result in significant expression of IFN Gamma that may cause weakening or loss of oligodendrocytes

I’m sure there are more; please share and I will review. My intention with all this is to be prepared to ask good questions when I call the doctors about this (as noted below). In the meantime, I’ve added some links to my effort to build a chronology:

1) Monocytes and Macrophages can be infected with CPn
2) Infected Monocytes and Macrophages can cross the BBB and gain entry to the CNS
3) Step(s) that go here in sequence are unclear
4) Microglial cells that are already in the CNS become infected with CPn
5) Step(s) that go here in sequence are unclear – but something causes more IFN Gamma to be expressed
6) Excessive amounts of IFN Gamma causes oligodendrocyte death
7) Step(s) that go here in sequence are unclear
8) Myelin loss occurs

You might say, “Ken, you got it all figured out above – just stick the links about IFN Gamma in the list and you’re done.” Yes, I definitely thought about that. I want to, but I think I need better info than what I have to really feel convinced. Maybe someone will toss in some links or maybe a call to the doctors will sort it all out. After all, I’m just aiming for a logical theory that’s backed up somewhat in the research.

Questions I’m working up for Dr. Wheldon, Dr. Sriram and Dr. Stratton

1) How do you think the pathogenesis of MS follows from Chlamydia Pneumoniae infected cells entering the central nervous system to myelin loss?
2) Is Interferon Gamma implicated this pathogenesis?
3) Can myelin or oligodendrocytes be infected with Chlamydia Pneumoniae?
4) Once the entire Combination Antibiotic Protocol (CAP) is completed, is maintenance required and is reinfection possible?
5) If more NAC is taken already, should amount be reduced?

Questions About Supplements

I’ve read through the Dr. Wheldon’s website and the CPn Handbook, including sections on Candida and the Secondary Porphyria. Here is something of a composite list of supplements that I’ve put together. Kim is already taking a lot of these in the stated amounts. The first general question is, “Does this look about right”? Then I have some specific questions below.

Vitamin C at least 2000mg daily (antioxidant also helps porphyria)
Vitamin E at least 800 iu daily (antioxidant also helps porphyria)
Fish Oil Omega-3 Fatty Acids (antioxidant)
Evening Primrose Oil at least 1000 mg daily (antioxidant)
Acetyl L-Carnitine at lease 1000 mg daily (antioxidant also helps porphyria)
Coenzyme Q10 200mg daily (antioxidant also helps porphyria)
Selenium 200 mcg daily (antioxidant)
Vitamin D 4000 iu daily – D3
B-Complex daily in evening (not at same time as Doxycycline) (also helps porphyria)
- Folic Acid 800 mcg daily
- B-1 (Thiamin) 20 mg daily
- B-2 (Riboflavin 20 mg daily
- B-5 (Pantothenate) 200 mg daily
- B-6 (pyridoxine) 200 mg daily
Magnesium 300 mg daily in evening (not at same time as Doxycycline)
Calcium 500 mg daily in evening (not at same time as Doxycycline)
Lactobacillus Acidophilus (daily?) for bowel flora
Curcumin 1500 mg daily (Anti-Inflammatory, Antifungal)
Oregano Oil 450 mg twice daily (Antifungal, Anticandidal, Antiviral)
Bioflavonoids (Quercetin)
Alpha lipoic acid 800 mg daily (antioxidant also helps porphyria)
Activated Charcoal 2000 mg three times daily for Porphyria increasing to 4000 mg three times per day on empty stomach

1) How much fish oil omega-3 should one take?
2) Do I have it right that magnesium and calcium should not be taken at same time as Doxycycline?
3) I think I can get Lactobacillus Acidophilus at the Vitamin Shoppe, do I just use the amount the directions say? Do we do this all the time or only when we think there is a candida issue?
4) Do we only need to use the Oregano oil in response to candida issue?
5) How much Bioflavonoids and/or Quercetin should be taken?
6) Should Activated Charcoal be taken on an ongoing basis, or only as a response to porphyria?
7) Do some of these supplements substitute for each other? Meaning, could taking extra fish oil and evening primrose oil make up for taking less vitamin e? Also, none of the vitamins Kim is taking have B-5 in them.

I'm also adding NAC here and in the regime below:

NAC 3600 mg (this is in ADDITION to the regime)

There is a pilot study that Dr. Hyman Schipper, a neurologist in Montreal did with NAC and Copaxone. The study is complete but not yet written up and published. I called him. He said the primary reason for doing the study was safety, which was demonstrated. They also observed some good MRI results. The folks in the study were taking 5 grams of NAC a day.

Dr. Wheldon’s Regime

Similar to my effort to nail down the list of supplements, I wanted to ensure that I completely understand the timing and process of Dr. Wheldon’s regime. I did not include NAC or B12 in the list above because it seems to be more a part of the specific regime or something that got changed in the chronology of the regime.

Pre-Treatment
NAC 1200 mg (exposes Chlymydial EB’s)
Sublingual Vitamin B12 (methylcobalamin) 4000-5000 mg three times a day (also helps porphyria) (WOW, this is a lot!)
Other Supplements to be taken continuously, listed separately

First 2-3 months
Continue sublingual Vitamin B12 (methylcobalamin) 4000-5000 mg three times a day
Introduce Doxycycline 100mg once per day

When NAC and 100mg of Doxycycline are well tolerated, add Roxithromycin 150mg twice a day -or- Azithromycin 250mg three times a week

When NAC, 100mg Doxycycline per day and 150mg Roxithromycin twice a day (or 250mg three times a week) are well tolerated, increase Doxycycline to 200mg per day.

Following 9-10 months
Taper Sublingual Vitamin B12 (methylcobalamin) to 4000-5000 mg daily
Continue NAC
Continue Doxycycline 200mg once per day
Continue Roxithromycin 150mg twice a day -or- Azithromycin 250 three times a week

Introduce Metronidazole (Flagyl) 400mg up to three times a day as follows:

First time take 1x 400 mg tablet. Then wait 3-4 weeks.
Second time, take 1x 400 mg tablet. If that seems to be tolerable take a second one the same day and if that seems tolerable take a third one that day. If first day is well tolerated, shoot for 2 days or maybe 3 or more until it is not tolerable. Don't go beyond 5 days (15x 400 mg tablets). Then wait 3-4 weeks.
Third time and thereafter, repeat the second time.

Second Year
Discontinue daily use of Doxycycline and Roxithromycin
Discontinue Metronidazole (Flagyl) 400mg x3 pulses every 3-4 weeks
Introduce two weeks of Doxycycline 200mg once per day taken concurrently with Roxithromycin 150mg twice a day -or- Azithromycin 250 three times a week
Introduce Metronidazole (Flagyl) 400mg three times daily for 5 days in second week of intermittent Doxycycline and Roxithromycin

Take no antibiotics for 6 weeks

Repeat this process for second year in 5 more two-month cycles.

Did I get this pretty accurately? I want to also add that since Kim is on quarterly Novantrone (just completed #5), it is my understanding that we might want to time the Metronidazole pulses to be a week before the Novantrone infusion and then 2-3 weeks after the infusion. Is that logical? Did I get that right Daisy?

Thank you everyone for helping us on this path. Ken

Wow Ken, what a lot of work you have put into this! Thanks so much for such a thorough investigation and disemination of this.

Lori

I will withhold my comments on your interpretation of the protocol, Ken, as I think Sarah or David are the best judges of how accurate you are. 4800mg of NAC is a LOT, though.

I think, once you have refined this, it will be a truly fine thing to offer to newbies as an overview. Kudos.

Ken, good work! I'll put a few ideas together by later tomorrow for you, since my computer is OK now and my hand starting to feel a lot better.

Mac, the NAC dose Kim was already taking, nothing to do with this regime. Really, its so good for you, if you can take more, do.

Sarah

Sarah, I know Kim's already taking that much, but it's listed under the 'Wheldon protocol' section. (He may have changed the pages since I last read it, but I didn't recall it being that high. Of course, that's why I said I wasn't the right person to comment on his delineation of David's protocol.)

I was marveling at the work of art which this 'notebook' is. I could never have done that with my early brain fog, so here is tangible proof how important it is to have a caring advocate when this bug bites you.

Mac, no David hasn't changed it to that amount, but neither has he changed the B12 amounts to what I consume. Some people do take that much NAC and it isn't poisonous at that dose, so any supplement dose is merely a recommendation so long as it is at safe levels. Its the antibiotics that one needs to get right []

Sarah

Sarah, How much B12 are you still taking? I'm down from about ten of the sublinguals you recommended to about six a day now. I don't seem to need it as much after two years.

I am, however, still taking 7000iu of Vitamin D daily.

My apologies, having re-read the lengthy post, I see it's a 'compiled list' of vitamins/supps culled from not only the Wheldon site but the CPn Help site.

Hi Mac! I have upped by B12 rather than decrease it, to four x 5000mcg sublingual, or sometimes 5. This is mainly because I still have a lot of nerve damage, which you didn't. But I quite like the taste as well. I also still take 4000iu of D daily. And plenty of NAC of course!

Sarah