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

[MacKintosh]

Ken, Any time. Let me know.

[SarahLonglands]

And when I got round to it, I double post!

[SarahLonglands]

At long last, my reply! By the way, I am impressed with the way you got the columns to line up: I've tried it myself.

I have been reading through your list, comparing it with David's and the porphyria list, which answered my question as to where glucosamine came from. Now, that list is aimed at all sorts of people, not just people with MS and I think it tries to cover all eventualities. I don't think I ever suffered over much from secondary porphyria. For instance, when David first started me on it, he tried to get me to eat a very high carbohydrate diet. That fell by the wayside pretty quickly, I must say.

All the supplements in either list are not compulsory, neither are the amounts. They are just advice to enable someone to get the most out of the antibiotics. (From this comment I would exclude Vitamin D and NAC and maybe B12 which I think are definitely essential.) Amounts are another matter:for instance, with abx, when you get onto flagyl, you will notice that the Stratton dose varies from the Wheldon dose. The reason for this is the tablet size available in both countries. The amount of difference between the two is not enough to make any difference. The same applies to supplements, so since there must be some reasoning behind Kim's list, why not keep it as it is, as another alternative? B12, by the way, being a water-based vitamin, can be taken in as large a quantity as you feel.. I alter mine at will, erring on the higher side.

I don't take evening primrose oil any more but just rely upon salmon oil. I've never read Judy Graham's book so I can't comment.

Proflavanol: I'll have to look into it and maybe try it myself if I can find somewhere to get it. I guess the difference is in the bioflavanoids used.

I'll also try the larger amounts of NAC for a couple of weeks and get back to you.

I take turmeric to stop by feet buzzing: about 3 gms.



I think Lori is right, by the way, about both your friends who are physicians and your GP being able to refer Kim to Vanderbilt. You do need to make sure you se a neuro who is willing to go along with abx, though: they all have their own ideas. I know you might feel like you are going out on a limb too much, but if your GP will refer, perhaps he/she would also be willing to prescribe, with Charles Stratton's advice. That is what several people are doing and it could be set into train quite quickly.

Sarah

[notasperfectasyou]

Where to begin ......

Moving Forward

Kim has started her own blog at CPn Help!!! She is kimscupoftea. This is very exciting for both of us. Despite my frustrations with finding a doctor, I'm confident that Kim's going to be ready to get ABX soon. So starting her blog now seemed like the exact right time. We just got a call from her Neurologist's office that the medical record copying service has her records ready! OMG! We now need an outside service in another state to make copies of medical records! So we will make more copies and get a set to Vanderbilt ASAP.

Replies

Sarah - I can't begin to thank you enough for helping me along this path. I sure hope I can contribute even a tenth as much as you to forward this whole effort for all. I'll increase Kim's B-12, which BTW is the methylcobalamin kind which is harder to get, but was recommended somewhere - I forget where. I think we're going to decrease the Evening Primrose Oil and add Acetyl L-Carnitine, Alpha Lipoic Acid and more B-12. Proflavanol is a vitamin C supplement that is produced by USANA. It's ridiculously expensive for vitamin c, but I can say that when Kim doesn't take it, she doesn't walk so well. I can't expalin why this particular tablet is the "must have", but I can't deny it's impact.

Removing N-Acetyl Glucosamine

I can't know for sure, but I have to wonder if this stuff is associated with Kim's current exaserbation. I've removed it from the vitamin mix and put glucosamine chondroitin back in. I feel really bad about this. The new supplements list (with other changes) looks like this:

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 . . . . . . . . . . . . . . . .. . . . . . . . 1300 mg x2 daily
Acetyl L-Carnitine . . . . . . . . 500 mg daily . . . . . . . 500 mg x2 daily . . . . . 500 mg x2 daily
Alpha Lipoic Acid . . . . . . . . . 150 mg daily . . . . . . . 400 mg x2 daily . . . . . . . 345 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 . . 5000 mcg x2 daily
Lactobacillus acidophilus . . . . . . . daily . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 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 . . 750 mg x2 daily
Chondroitin . . . . . . . . . . . . . . . . . . . . . . . . . . . .. 250-500 mg x2 daily . . . 600 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

Thanksgiving

We have a lot to be thankful for, especially everyone here at TIMS and at CPn Help! While we're not quite on the path, but we just know we will hit a breakthrough. We'll be in Pennsylvania with the rest of our Steeler Family and we will nudge a family pharmacist a bit while we're up there. We're taking a copy of "The Notebook" just in case. Please visit with Kim at CPn Help and have a healthy and safe holiday

Ken

[MacKintosh]

Ken, Hoping to hear good news on your return....

[notasperfectasyou]

I know that my posting has gotten a lot less thought out, I hope this is ok with everyone. Most of the thinking problems have been resolved for us in this thread and I hope I've left a good road map.

This part of getting the prescription is so very complicated.

Our family pharmacist can't help, he doesn't seem to know a doctor that can help us.

Kim went for her 6th Novantrone yesterday and ......... didn't get infused. The Oncologist Hemotologist said he had concern because of Kim's bursting blood the last time around. Kim gave him one of the "Notebooks" and made a very passionate argument for wanting ABX. At first he did not seem responsive to the idea and suggested that Kim try Tysabri. Kim was firm in her resolve and mentioned Vanderbilt and he perked up, promised to read the "Notebok" and ..... ok this part is a little squishy, but it sounds like Kim might get a script next week. That's a big maybe.

Finger's Crossed.

We finally got Kim's Neurologist records. Apparently, doctors now need an outside service to process this stuff. This took 3-4 weeks to get. But we got them. I gave Kim the number at Vanderbilt to call today so we can find out where to send them and how to get an appointment.

Finger's Crossed.

I also have a list of possible doctors (thank you) and I'm going to run them through Kim's case manager at the health plan. The case manager nurse seems to think this is a gret idea and I'm trying to figure out how she can be supportive of some of this effort.

Finger's Crossed.

I realize that going to Vanderbuilt is the best route to take. But, I'm hoping to get Kim some relief soon. She's very unhappy about being pulled off Novantrone.

Ken

[SarahLonglands]

Gosh, Ken, things seem to be taking a turn for the better! One of David's best friends is a haemotologist and if he hadn't been allowed to prescribe for me, as his wife, the friend would have done.

If you can get her started, you can go to Vanderbilt at your leisure, so the very best of luck.

Sarah

[Loriyas]

Ken
Why not make the appointment at Vanderbilt so you will have it for the future, then continue to find someone closer in the meantime? It can't hurt to have the appointment, you can always cancel if you want, or you can still go for a second opinion. They are considered the experts in this so you will have consultation from the top. I think it will then be less difficult to convince your other doctors. At least, that is what I am hoping will happen for me. If you only go to docs who are not familiar with this you run the risk of them changing their minds and stopping the antibiotics. Then you'll be needing to go to Vanderbilt anyway, but time will have passed.
Lori

[notasperfectasyou]

Thanks Lori and Sarah.

Kim and I called Vanderbilt today and we were told that we need a referral from Kim's Neurologist or primary care physician - OMG! It took a month just to get copies of medical records.

Kim has a new primary care doctor, but this continued dependence on the doctor to get arond to doing something is depressing. I definitely got the message that there is no way in hell I can talk with Dr. Sriram. I am discouraged. ken

[notasperfectasyou]

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

The gatekeepers at Vanderbilt are really good. I have e-mailed Dr. Sriram since I can't call him. When we're all done with this, I really want to know what I can do to help make this easier for folks.

What can we do, all of us to help make this a more acceptable medical treatment? How can we help the thousands behind us to overcome all these barriers?

It's very sad to think of the persistance that is required. Only those with the will can get treatment. I know that was sarcastic. Yes, I am hopeful and positive, just very frustrated today. ken

[SarahLonglands]

Ken, to my mind the main problem at the moment is not having enough doctors, whether neurologists or others to treat people with MS. It is jut too new a treatment, not yet accepted. If you have a GP or whatever willing to prescribe, Charles Stratton, the Vanderbilt Associate Professor in Microbiology is willing to mentor that person, without charge s far as I know, because he isn't primarily a physician but a researcher and lecturer. In fact he did most of the work at Vanderbilt linking Cpn to MS. Like David, he has only a certain amount of time to spare for this, unless he is aiming at being made redundant. This applies to Sriram as well.

The best way to make it easier for folks is to get more people willing to treat. This will eventually happen, but at the moment, one has to fight. A couple of years ago David was told by the hospital management that he cold carry on treating me, but nobody else because it wasn't yet approved. He ignored them, but not many doctors are so brave. Why not put the haemotologist in touch with Stratton? He will talk to any physician seriously interested. All is not lost, but you must keep a level head. Try to have a good night's sleep tonight an think about it refreshed in the morning.

Sarah

[MacKintosh]

Ken, Though I'd hoped for better news, all is certainly not lost. Many of us have overcome 'the system' and found ourselves a prescribing doctor.

Please check my pm to Kim over on CPn Help, regarding one option.

[notasperfectasyou]

It's the little things in life that can make a huge difference. Something like a night of sleep can help get things in perspective.

Kim is going to call her Oncologist on Monday. He already has a book. He was open to giving Kim a script on Thursday for a month of abx. Kim's going to follow up and give him Drs. Sriram and Stratton's phone numbers.

Kim is also going to start pushing her Neurologist for a referral. This is harder than it sounds, he's a highly regarded doctor in this area and he has a very large patient load. We will give him a notebook too.

I also sent Dr. Sriram an e-mail last Friday and I hope (since I can't reach him by phone) that he might reply to my e-mail. It's a lot less personal, but it seems like it's the best I can do.

Kim got a reply in her CPn blog that she can call to get a 2 month supply of abx - how or where does she do this?

Kim's also going to call one of the doctors we know to give her an update and see if she would be open to calling Vanderbilt on Kim's behalf to talk with the doctors.

Feeling more like a flathead, Ken

[SarahLonglands]

Ken, I put a click *here* note on Kim's blog, to say where she can order them from safely. I can't do the same thing on this site.

What is a "flathead"?? Sarah

[notasperfectasyou]

you must keep a level head.

My sense of humor at work.

I'll check out the link tomorrow. I pray that this week is a big week for us.

I'll reply at cpn soon.

Sleeping better, Ken