In Pursuit of ABX - May I have coffee with my milkshake?

[SarahLonglands]

Hi Ken,

Firstly In want to say what good job you have made of this, yet at the same time ask if it is all really necessary for presenting to a likely physician. My experience of them, in this country at any rate, is that they are painfully short of time and don't take kindly to patients or families of patients dumping volumes of information on them. Their eyes just glaze over. Its not that they aren't interested, but they just don't have the time.

Maybe the thing to do is first to show the chosen doctor just David's treatment pdf and the two papers cowritten by him and Stratton. This excellent review can then be shown once interest is aroused, in order to find out more about what is essentially a new treatment. There are so few treatment options for someone like Kim that this should be all that is required in the first instance. The thing to do is get her started on the treatment as soon as possible and these three papers have worked wonders in this country, the USA, Israel and several European countries. Once started, the doctor will have time to look further into it and the non-medical notebook is an excellent idea for friends and family.

Good thing to opt for the doctor husband of Kim's friend, though, rather than a neurologist, just because Kim is has MS and "neurologists are the ones who treat people with MS."

In your questions about supplements, yes, it does look about right although I think charcoal can just be taken as required, as much as required, but definitely on an empty stomach.

1) Recommended fish oil is 4000mg a day. I must tell David that he doesn't mention amounts.
2)Calcium and magnesium supplements are best not taken with doxycycline. Small amounts of calcium in milk or other food are OK though. I often took mine with a glass of milk because it is better to line the stomach so as not to feel sick.
3)I don't know how much lactobacillus Vitamin Shoppe recommend, but again, it can be increased as needed. I probably needed less because I ate loads of live yogurt. You will need some on a regular basis, though, because abx will wipe out the bowel flora. You don't wait for candida t rear its ugly head.
4)Yes, I never took oregano oil!
5)I never took quercetin either, but with bioflavanoids, relied on the amount in vitamin C capsules with added bioflavanoids.
6)Probably as a response to secondary porphyria. I took yaeyama chlorella instead because you don't need to take that on an empty stomach. I was taking it before we read Stratton's recommendations on charcoal. This is maybe why I never felt any benefit from taking charcoal.
7) Yes! I just went to look at my Bcomplex. It does have some B5 but I don't imagine the treatment wouldn't have worked unless it did.

When David first designed his regime NAC was not included. I went for eighteen months without taking it. He added it as a non abx alternative to amoxicillin, at that time use by Stratton.

It would be very hard to overdose on B12, being water soluble. At first I had injections once a week at the GP's practice. More is absorbed this way, but in the UK methylcobalamin was not available, so I decided to change to sublingual, but taken every day to keep up the rates in my system. David saw that I was doing this and also knew that many GPs balked at prescribing it, so he changed his regime to sublingual methylcobalamin. I never tapered the B12, because I have this thing about neuroectoderm: CPn Help/neural_ectoderm_and_my_ha

As far as the "second year" goes, only do this when reactions to metronidazole or tinidazole have stopped.

Sarah

[notasperfectasyou]

Thank you Sarah, I'm really working a lot on this. I'm not just doing this for Kim, but for everyone here. I hope that by making my process of disernment open, our community can grow in a very positive way.

Putting the Steps in Order

I realize that this is entirely speculative, so you have to read this with a skeptical eye. I’m going to lay out my best guess on this based on articles I have read. I’m doing this because I hope folks might look at this and read the linked articles and contemplate some of the details of CPn and how it might be linked to MS. Please don’t read this and start telling folks that this Ken guy has it all figured out. This is a guess and I want to know if it’s logical.

1) Monocytes and Macrophages can be infected with CPn.
2) Infected Monocytes can cross the BBB and gain entry to the CNS.
3) I don’t have an article that says that infected monocytes in the CNS can spread CPn infection to microglia, but I do have an article that says that Microglial cells that are already in the CNS can become infected with CPn and that infection can replicate. I also found an article that shows that CPn infects and multiplies in T-cells. I don’t mean to assume anything, but most every widely accepted theory of MS involves one or both of these cells doing something in the CNS.
4) The body responds to CPn infection with an immune response composed of Interferon Gamma, CD4+ T-cells and CD8+ T-cells. IFN Gamma is normally expressed by T-cells and IFN Gamma doesn’t normally belong in the central nervous system. IFN Gamma is also expressed by macrophages and B-cells
5) IFN Gamma kills oligodendrocytes. It doesn’t seem to matter whether they are developing or mature, exposure to IFN Gamma still results in cell death.
6) I couldn’t find an artilce that says that Oligodendrocyte death causes myelin failure. The concept is either too textbook to be an article topic or there is unknown involved. As I understand it myelin really is part of the oligodendrocyte, but I don’t (as you know) like to assume. I did find an article that describes a case where Oligodendrocytes dissappear before commencing phagocytosis of myelin. I can’t find the entire artilce for free on the net, but I did read it and it’s quite clear about myelin loss happening after oligodendrocyte death.
7) IFN Gamma inhibits remyelination

I also want to know how this might be adjusted to better fit the CPn model. After I get some feedback, I’ll make some phone calls or send some e-mails.

Minocycline

Does this fit in the protocol? Drugs have so many different names and then there are generic names and stuff. I know that I plucked an article about this stuff in the notebook, and maybe this was a mistake. Should I remove this from the notebook? What’s the relationship, if any, between Minocycline and the abx in the Wheldon protocol?

The Notebook

One copy of the notebook has been delivered. I didn’t want to take the time to rip it apart and reassemble it. The opportunity to give it to our friend came up sooner than we expected. I am absolutely open to changing it, thank you Sarah for your comments. I’m hoping we don’t need to make anymore notebooks.

Supplements

I want to update this, but just don’t have time right now. Sarah, thank you for your post. I will get to this soon.

Protocol

I went back and editted the NAC to make it more confusing, no, I mean more clear, or hopefully more clear. I didn’t do much work this week on the protocol because I wanted to work on developing a better understanding of the pathology involved.

Clearly more hopeful I am. Ken

[MacKintosh]

Okay, Yoda, more hopeful you are. Your sense of humor is showing... I'm liking it.

When will your friend give feedback on the novel?

[notasperfectasyou]

Kim and I have been focusing on our son Jacob the last 2 weeks and have not had much time to devote to ABX and MS. Jacob had his appendix removed and I needed to take him back to the hospital with what turned out to be paralytic ileus. Kim’s been camping at the hospital for the last 11 days without break. Both of them finally got home last night. Hooray!!!

I hope in the next couple weeks I can get back here and move this thread forward. I hope Kim and I will have time to catch up with our friend regarding the notebook, excuse me …. novel. Oh yeah, Yoda does have a sense of humor, I try to be more serious here, but on occasion I just might have a tiny slip.

Supplements

I’ve tried to make a more clear presentation of the supplement regimen and I’ve included Kim’s current supplements for comparison. Thank you Sarah for your last reply which I’ve incorporated into my thinking on this. I’ve read some of the recent stuff on Glucosamine and this is why you’ll see that Kim’s on NAG instead of GC.

I’m going to highlight the places where Kim is short of the Wheldon Protocol and ask if you think her regimen should be adjusted. If you happen to be impressed with how I got the columns to line up, it was painfully slow.

Supplement . . . . . . . . . . Wheldon Adjuncts . . . . . Porphyria Regimen . . . .. Kim’s Current

Vitamin C . . . . . . . . . . . . . . 1000 mg daily . . . . . . 1000 mg x2 daily . . .. . . 4950 mg daily
Vitamin E . . . . . . . . . . . . . . . 800 iu daily . . . . . . . . 400 iu x2 daily . . . . . . . 400 iu daily
Omega 3 Fish Oil . . . . . . . . 4000 mg daily . . . . . . . . . . . . . . . . . . . . . . . . . 1200 mg daily
Evening Primrose Oil . . . . . 1000 mg daily . . . . . . . . . . . . . . . . . . . . . . . . . . 5200 mg daily
Acetyl L-Carnitine . . . . . . . . 500 mg daily . . . . . . . . 500 mg x2 daily . . . . . . . . . . . . . . . .
Alpha Lipoic Acid . . . . . . . . . 150 mg daily . . . . . . . 400 mg x2 daily . . . . . . . 45 mg daily
Coenzyme Q10 . . . . . . . . . . 200 mg daily . . . . . . . . 30 mg x2 daily . . . . . . . 72 mg daily
Selenium . . . . . . . . . . . . . . 200 mcg daily . . . . . .. 100 mcg x2 daily . . . . . . 200 mcg daily
N-acetyl cysteine . . . . . . . . 600 mg x2 daily . . . . . . . . . . . . . . . . . . . . . . . . 4900 mg daily
Vitamin D . . . . . . . . . . . . . . . 4000 iu daily . . . . . . . . . . . . . . . . . . . . . .. . . . 5000 iu daily
Vitamin B Complex (1) . . . . . . . . daily . . . . . . . . . . . .. see below . . . . . . . . . . . . . . . . . .
. . . Folic Acid -B9- . . . . . . . . . . . . . . . . . . . . . . . . . 400 mcg x2 daily . . .. . . 1000 mcg daily
. . . Thiamin -B1- . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 mg x2 daily . . . . . . .. 27 mg daily
. . . Riboflavin -B2- . . . . . . . . . . . . . . . . . . . . . .. . . . 10 mg x2 daily . . . . . . .. 27 mg daily
. . . Pantothenate -B5- . . . . . . . . . . . . . . . . . . . . . . 100 mg x2 daily . . . . . . . . . . . . . . . . .
. . . Pyridoxine -B6- . . . . . . . . . . . . . . . . . . . . . . . .. 100 mg x2 daily . . . . . . . 32 mg daily
. . . Biotin -B7- . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 mg x2 daily . . . . . . . 300 mcg daily
Magnesium (1) . . . . . . . . . . . 300 mg daily . . . . . . . . . . . . . . . . . . . . . . . .. . 700 mg daily
Calcium (1) . . . . . . . . . . . . . . 500 mg daily . . . . . . . . . . . . . . . . . . . . . . . . . 1070 mg daily
Sublingual B12 (2) . . . . . . 5000 mcg x3 daily . . .. 5000 mcg x3-6 daily . . . 6000 mcg daily
Lactobacillus acidophilus . . . . . . . daily . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Turmeric . . . . . . . . . . . . . . . . . optional . . . . . . . . . . . . . . . . . . . . . . . . . . .. 2295 mg daily
Bioflavinoids . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . daily . . . . . . . . . . .. 458 mg daily
L-Glutamine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2-4 g x2 daily . . . . . . . . . . . . . . . . . .
Glucosamine . . . . . . . . . . . . . . . . . . . . . . . . . . . 750-1000 mg x2-3 daily . . . . . . . . . . . . . .
Chondroitin . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 250-500 mg x2 daily . . . . . . . . . . . . . . .
N-Acetyl Glucosamine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .500 mg x2 daily
Activated Charcoal (3) . . . . . . . . . . . . . . . . . . . . . . . . . optional . . . . . . . . . . . . . . . . . . . . .

(1) Not to be taken at the same time as Doxycycline
(2) This is adjusted in the protocol – see protocol
(3) Taken 2hrs apart from food start with 2 g x3 daily

I removed Oregano Oil since it’s strictly for candida and creating a new column would have been very slow.

Should we increase all these supplements up to the full Wheldon Adjuncts regimen, or do some of the excesses in others compensate? BTW, there’s other stuff Kim is taking which would double the length of the list. In the interest of full disclosure some of the other stuff includes or is in:

USANA Mega Antioxidant (already included above)
USANA Chelated Mineral (already included above)
Ginkgo Biloba
Iron
Food we eat

Why You Doing That?

I think there is a tendency to keep taking the supplement long after you forget the reason your taking it. This is a good test for me.

Evening Primrose Oil - a few years ago I read a book by Judy Graham that effectively said you need to take lots of this stuff for your MS. The book is titled, "Multiple Sclerosis: A Self-Help Guide to its Management. I'm sure I got the dosage from the book. Someone who can still find their copy might post an excerpt since I can't find this book in the house.

Vitamin C (ascorbic acid) - You don't need to read the entire linked post, but I'm partial to it since I spent weeks putting it together. Ok, bottom line is there's a USANA product called Proflavanol and when Kim runs out of it, her walking deteriorates significantly. We can't explain it. We can take other vitamin C and it's not the same. We get visible results from this Proflavanol stuff.

N-acetyl cysteine - 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. Schipper is Googleable.

Turmeric - I'm sure there's more out on this since long ago when I started counting out the little yellow pills for Kim. Link goes to another one of my older posts.

Putting the Steps in Order

I’ve not gotten on the phone yet. But, I did go back and reread Dr. Charles Stratton and Dr. David Wheldon’s article, “Multiple sclerosis: an infectious syndrome involving Chlamydophia pneumoniae”. The following statement is made in the discussion of potential roles of infectious agents in MS:

”Moreover, an infectious pathogen might function as an initiating agent and, thus, triggers secondary autoimmune process. This auto immune process might result from structural similarities between an infectious agent and neural antigens (antigenic mimicry)…”

Also I found the following article by Drs. Sriram, Rose, Yao and Whetsell titled, “Detection of Chlamydial Bodies and Antigens in the Central Nervous System of Patients with Multiple Sclerosis”. The following statement is made in the discussion section of the article:

”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”

The key word here is mimicry. This leads to a second speculative version of the pathology of MS as follows:

1) Monocytes and Macrophages can be infected with CPn.
2) Infected Monocytes can cross the BBB and gain entry to the CNS.
3) The immune system in the CNS attacks infected monocytes. Some of the immune system cells are APC’s and they will rip up the infected cell and the CPn and create peptides that will alert the immune system about the building blocks of other antigens. The point is that there is potential for scaps of CPn genetic code to be recognized as “foreign stuff to be attacked” by immune system cells in the CNS. To understand this process better read this post.
4) If the immune system got a hold of a piece of CPn that also, coincidentally, contained genetic code that matched some of the myelin genetic code, then you’d have potential for the immune system to read myelin as antigen. The coincidence that a bacteria and oligodendrocytes might share some genetic sequence is called molecular mimicry – read third paragraph of this paper.
5) This might all seem very unlikely, but so are the odds of having MS. Here’s an article that presents A virus-induced molecular mimicry model of multiple sclerosis”. The idea here is that the immune system is chasing after CPn and discovers that myelin is similar enough to CPn that the myelin gets attacked. Here’s an article that opens with some discussion of Dr. Sriram’s work and finds that a segment of a CPn protein is shared with myelin basic protein. Finally, here’s a more current article linking microorganisms and MS.

I don’t know enough about molecular mimicry to know if I have this right. I liked the IFN-Gamma model better, but I’m not a scientist. What do you think?

Ken

[SarahLonglands]

Hi Ken, I've been very lax as well, for other reasons. I haven't even answered your last post yet.

Best wishes to Kim and Jacob: I'll have to take a look at your new list now! Busy until Monday, now.

Sarah

[notasperfectasyou]

Thank you Sarah. Jacob is back in school, fighting with is brother and cutting the toothbrushing clock. He’s got his first basketball practice next week. Don’t stress about replies, we are all busy and I always like to read your thoughts, wherever I might find them. I’ve given Kim a complete copy of Rica’s blog at CPn Help, she loves it. Kim’s thinking of starting a blog.

Where do we go?

Today Kim got a call from her case manager that her health insurance provides. Kim told her all about the ABX that she wants and how we’re working on trying to get two doctors to work with us and prescribing. Kim’s case manager was excited to hear about the protocol and she’s definitely into the idea. Now comes the complicated part – navigating the world of American Health insurance.

She’s recommending that Kim try to get into a clinic like Mayo or Vanderbilt that already has a functioning protocol for ABX treatment of MS. Apparently it boils down to having the right code to put on the medical claim form; and if you are taking ABX for a long time it’s going to get questioned. But, if you are getting prescribed from a place like Vanderbilt that has an accepted protocol you get insurance coverage.

Is it as simple as calling the Vanderbilt MS Clinic?

Has anyone done this before or are most of the folks doing this (Please Reply) going outside of insurance and buying the drugs completely outside of the normal health insurance primary care participating doctors yada yada yada route? Not that it matters, but if you are paying for this without insurance, how much does it cost?

Also, if we go the direction of calling Vanderbilt, can we avoid them needing Kim to have a lumbar puncture? How does this go?

Does it matter which doctor we consult with? I think it would be great if Dr. Sriram could work with us, is that a ridiculous request?

I realize I’m jumping ahead here, but we want to get started on this. Should we try to see if the two doctors who have the book can help us with getting to see Dr. Sriram soon? I feel like there is a fire alarm and I can’t see any doors or exits.

Stuff that isn’t food

So aside from the list of supplements that I still hope to get some replies about (a few posts up) I need to mention that Kim takes Provigil, Copaxone and has 3 more Novantrone infusions to go.

Thank you all, we will beat MS!
Ken

[MacKintosh]

Ken. I am going through Blue Cross and they have never questioned my three prescriptions for antibiotics! If push came to shove, I take doxy for my acne, azith for chronic lung infections and flagyl for vaginal infection. Done deal. But I am being treated for cpn infection for two years now and have never been questioned or challenged.

[SarahLonglands]

Right, quick reply, supplements to follow:I suggest you phone Sriram and ask him to see you both. Loriyas, from Florida has just done exactly that and has been given an appointment in December. Be forthcoming about Kim's history and why you have decided o this course. Say you have read "Antimicrobial Treatment of Multiple Sclerosis" by Stratton and Wheldon. Say Kim doesn't want a lumbar puncture. I think they are only necessary for trials.

Good luck,
Sarah

[notasperfectasyou]

Thank you Sarah!

I did call just now. I got Sandy on the phone. Dr. Sriram is out of the country until next week. While she did say that Dr. Sriram doesn't normally talk with patients until he has met them in person, it didn't sound like I got a firm and absolute "no". But, it sounds like he's away right now. I hope that he will be able to take my call next Friday.

Sandy did tell me that we need to ask Kim's neurologist to fax her records to them and we need a referring doctor. I'm not of the impression that everyone else here or at CPn Help jumped through these hoops. Are we "doing it wrong"?

Happy Weekend Everyone! Ken

[SarahLonglands]

Ken, its only Lori who got through to Sriram, maybe because of what her husband does. Some other people have got Stratton to work with their GP, but he is the microbiologist, so that's not a bad thing. More tomorrow: its nearly midnight!

Sarah

[MacKintosh]

Well, Ken, I look at seeing Sriram or Stratton as asking to be seen by the head of the Mayo Clinic. I never felt it was necessary to go to that extreme.

I see a doctor here in Chicago who not only treats cpn, but has been through the protocol and understands it clearly. I was not even willing to wait the three months to see the MS guru at Northwestern Hospital (though I did see him eventually, three months into being on abx therapy)!! I was just determined to keep the infection from progressing even one more day and went on abx therapy within six weeks of diagnosis.

[notasperfectasyou]

Thanks Sarah and Frank.

I understand and will adjust to a proper protocol (in talking with doctors) as needed. It's just so frustrating jumping through hoops. I can honestly promise whoever wants to work with us that we'll follow the protocol and offer every possible effort to make it successful. All this waiting is killing me. Kim's mission this week is to follow up with the two doctors we made notebooks for. Did anyone else run into this kind of frustration?

Ken

[Loriyas]

Ken
Sorry to not have gotten back to you. I was away for the weekend. My husband ran the Marine Corps Marathon in Washington DC on Sunday. More on that later!

It was not a matter of pulling strings to get to see anyone at Vanderbilt. I was determined to go there and didn't know how to go about it. I emailed Dr. Stratton but received no response. I then emailed Dr. Sriram and received an email back from someone in his office to call to set up an appointment with him. So I did and that's how I got the appointment.

I will say that in my email I did not ask for the appointment with Dr. Sriram. I simply asked him for a recommendation of someone to see there who believed in antibiotic use for MS and followed the protocol. He decided that I should make the appointment with him. So that's how it came about that I have the appointment with him. It has nothing to do with what my husband does or anything else other than requesting a recommendation. I also have to have my neurologist send records prior to my visit. And although they didn't require it, I was prepared to have my GP send a referral.

I made the appointment in early October and my appointment is set for Dec 9. So I have had to wait about 2 months. I'm sure you can't get in right away. I was actually surprised not to have to wait any longer than 2 months.

So that's how it came about. If you have the appointment set then by all means do whatever is necessary to give them all the background information they request. It will only help your wife more with all the information made available to Vanderbilt.

I will post about my visit when I return so others may know what happened.

PM me if you have any other questions.

Lori

[notasperfectasyou]

Thanks Mac for the added sense of confidence.

Lori, I think this is about where we are too. We're getting copies of Kim's Neurological records this week and wil get a full set to Vanderbilt soon. we're also going to make an appointment with Kim's Neurologist to ask him for the referral and let him know what we are doing.

If we can't get the referral, we're going to try Kim's GP. The idea of getting the referral from doctors who are friends did not pan out. I speculate it's something like loaning friends money or something like that which can potentially mess up a friendship. Or maybe the fact that this isn't widely accepted practice is scary to them. In any case, we can't wait around waiting to find out wha they think. So we are moving on with this new route.

I'm also going to chat with Kim's brother-in-law who is a pharmacist over Thanksgiving. Maybe if we bang on some doors in the old hometown, we can find some help. Are y'all still out there? I still hope to get feedback on the supplements. Thank you for helping us!!! Ken

[Loriyas]

Ken
I would think Kim's GP would give you a referral. I think your friends who are physicians can't give the referral because she is not technically a patient of theirs.

When you ask the GP for the referral you don't have to say why you want to go to Vanderbilt, just that Vanderbilt is the place you would like to go to see an MS specialist. You don't need to get into a discussion about antibiotic therapy. You just want the referral to a specialist and that is where you would like to go. I can't imagine that he would give you a hard time about that.

Good luck!
Lori