Thank you everyone for your thoughts and suggestions. Since my last post here, I’ve signed up at www.CPn Help.org
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:
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:
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)
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.
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 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.
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