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

A forum for the discussion of antibiotics as a potential therapy for MS

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Postby Thomsyn » Sat Dec 08, 2007 12:25 pm

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Postby MacKintosh » Sat Dec 08, 2007 12:39 pm

Thomsyn, And your point is what? Interesting you post no personal profile and you post no narrative. Who are you and what is your purpose in posting this apparently negative link?
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Driving to Vanderbilt

Postby notasperfectasyou » Wed Dec 12, 2007 9:35 pm

Notebook Update

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

Bonus article!

I’m adding Combination Therapy With Interferon Beta-1a and Doxycycline in Multiple Sclerosis

I’ve not figured out how I want to insert it so it’s in the front pocket. I’m still open to thoughts from folks about the design and content of “the notebook”.

Vanderbilt Appointment

There are so many avenues we’ve thought about in this journey. I can’t thank everyone here and at CPn Help enough. Just when I was ready to start working on internet pharmacy as a solution, the Vanderbilt appointment worked out. I did take Sarah’s advice and e-mail Dr. Sriram directly. We also had Kim’s Oncologist very much ready to help. I don’t know that there’s a real easy way to get to the starting line, I called Johns Hopkins, Mayo and other universities to see if anyone could help prescribe ABX. I think persistence is a key factor.

The case manager nurse at the health plan was a bit helpful. She was able to check on the coverage for us, but really couldn’t do anything to help us find a doctor. It’s hard to tell what Kim’s Neurologist did, but we did get the needed records and MRI’s. Again, I think persistence is a factor. Also, being here and at CPn Help provided us with a regular place to chat about this and the fact that we could check in with others was very motivating.

I don’t know that there’s any recommendation I have on how to get started other than to be persistent and keep talking with people. Everyone who couldn’t help was actually helpful. We learned stuff, we learned why some folks could not help.

One avenue we did not try, but I’d like to put on the table is the concept of marching into your Neurologist’s office and asking for the referral. I think I got so convinced that this was not a good path that we just simply didn’t try it. But, honestly, I don’t think it’s a bad move. If we had this to do all over again, I think I’d have gotten an appointment to go in and ask for the referral sooner. Maybe after having read up real good on the CPn Handbok and some personal stories. Maybe after we became convinced that this was what we wanted and why we thought it was such a sound idea. Yes, I’d print up the stuff that makes up the notebook and I’d present it to Kim’s Neurologist and ask for the referral. I realize that he’s not going to write the script, but he’s much more likely to write the referral – they are two different things.

Similarly, the doctor that was breaktrough helpful was Kim’s Oncologist. So touching the doctors you know is a real good idea. Again, we might have gotten here sooner if we separated out the concept of asking for a script and asking for a referral.

So in summary, I’ve learned:

1) Be persistent
2) Recognize that asking for a script and asking for a referral are two different things
3) Keep talking, asking, message boarding, and reading.
4) Don’t be afraid to contact folks you don’t know
5) Contact the doctors you know best first, all of them. Talk about it with them.
6) Collect and retain every bit of info you get, even a “no” contains knowledge.
7) Prepare a well assembled packet of handouts that looks professional with journal articles for medically oriented folks to read. Mention Vanderbilt, if you need to get their attention.

Ken
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The Long Road

Postby notasperfectasyou » Mon Jan 07, 2008 2:14 pm

24 Hours

So it’s just my natural inclination to explain myself in a rather unbrief way. But, since no one is paying to me to do this, I get to type all I want. Honestly, I can’t really help but want to convey the feelings I have about things. Kim and I spent 12 hours driving to Nashville and 12 hours driving back the next day. So I figure I can spend up to 24 hours typing about our appointment in Nashville with Dr. Sriram.

The Science of Dad

As a kid I loved visiting my Grandparents. Mostly I remember my ever loving Grandmother and the big hug and kiss I’d get when I got there and before I left. I also remember my Grandfather who would sit in the big chair in the living room …. reading. Throughout his golden years, he never really retired from cancer research. While I never took an interest in his reading, I know that over the years his magnifying glass seemed to get bigger. In retrospect, I feel that I can now understand what he was doing and why it consumed so much of his time.

My Dad has never really explained his Geological research to me and I’ve only recently gotten to read a published article on which he participated in the research. While I have some idea that what Dad studies is important, I’d never know that from what he’s shared with me. But, I do know he gets stuff published.

So right or wrong, I see in Dr. Sriram the humility of my Dad and the dedication of my Grandfather. While we spent about 2 hours meeting, he was not in a hurry. He was interested in Kim’s case and I could tell that he didn’t want to miss any little clue that might be important. He was detailed in his asking and listening. Now this might sound ridiculous, but I couldn’t help but admire the seemingly old and worn leather medical doctor bag he carried with him. For me, the simplicity of his tools stood in contrast to the complexity of his science. He’s not out to impress anyone, he’s all about finding answers.

A Plug for Jack’s

We didn’t have much time in Nashville to see the city, but we had barbeque at Jack’s on Broadway. It’s a simple place with great ribs and we ended up buying some jars of sauce to bring home. We got lucky and found street parking in front of the restaurant. But, parking would otherwise be complicated. After our appointment we had catfish and ribs at the Sportsman’s Grille, which we walked to from the MS Center. The ribs were not as good as Jack’s but the cornbread was special.

Getting There

Mapquest directions worked out ok. We also got a map in the packet from Vanderbilt that really helped because the street name that mapquest had was “Capers” and not “Children’s Way”, but in fact the street is named and signed “Children’s Way”. I dropped Kim off by the side doors near the handicapped parking spaces. This worked out to be the best place to enter the building. If you’re expecting a large grand office, you might miss it.

There was a Starbuck’s several blocks up from the MS Center. If you share in this vice, you’ll appreciate knowing that it’s close.

The Appointment

They did all the standard neurological stuff. There was no mention of lumbar puncture, though the nurse was surprised that Kim had not had one before. Kim got weighed, walked and did the optical test. Dr. Sriram reviewed Kim’s MRI’s which we were required to bring. The MRI’s were returned to us at the end of the appointment.

Dr. Sriram wanted to hear Kim’s story and he asked a lot of questions, probing for details. He worked to develop a personal timeline of MS related events and I’d suggest to anyone going to Vanderbilt that putting something together that’s more thought out than thinking on the fly might be helpful. He wanted to know about exacerbations and we had some discussion of what an exacerbation actually is. I got the impression that there is an “official” neurological definition for the term and that we use the word more loosely to describe any “spike” in disability.

Dr. Sriram asked about childhood illness like severe colds and flu. Kim remembers having an illness as a kid that was bad enough that her Mom made a mustard plaster for her. I also added some detail (the three of us met together) and Kim was curious about my observations of her disability over time. She was a little surprised at my descriptions of her progression. I realize that she was right and I’ve reflected on this. I don’t like to draw attention to shortfalls as we make our way from day to day. Clearly, I notice them, but I don’t talk about them. I certainly imagine that I’ll make note of every little improvement I notice in Kim. I analogize this with weight. Replace the word “disability” with “fat”. We just don’t talk about this sort of thing unless we’re noticing some sort of improvement. But when you’re at the doctor and he wants to know the genuinely true observation, are you going to tell him your wife seems to have gained 20 pounds? In any case, I could tell that this caught Kim by surprise, but she appreciated me filling in the holes with her.

Dr. Sriram told us about the ABX protocol and we talked about the CPn community and the difficulty of getting this approach launched in bigger way. While I know doctors don’t make promises about treatments, I was surprised at his neutrality about the protocol. I’m at a loss right now on how to describe the impression I got, I suppose I was expecting him to tell us that ABX was a good bet and that’s not what happened. Now, as a skeptic by nature, I know all about disclosure and exceptions and conditional answers, he sounded reserved. I could feel the emotion in his voice when he said, “it helps some people and it doesn’t help others and I haven’t figured out why. If it helped everyone, we wouldn’t be sitting here right now.” I really got the sense that he’s wrestling with time. I think he knows that he’s got a puzzle piece that’s important, but he’s been hitting roadblocks trying to make it fit. I think he’s wondering if he’s going to see his work result in a cure in his lifetime. My Grandfather came to mind.

From my perspective, Dr. Sriram is a tremendous success. I also understand that he’s got very high standards for himself and for what he’s aiming to accomplish. I asked him what we could do to help him bring his work to others. He did not expect that sort of question and he pondered it for a solid 30 seconds, which seemed like minutes. He really didn’t answer the question but he talked about the difficulty in gaining acceptance in the medical community. I said the field of neurology has been married to autoimmunity for decades and he nodded. Kim made him laugh and told him that he had better fix her because she isn’t taking none of this “might this and might that stuff”. I asked him if he thought IFN-Gamma or molecular mimicry was more so the likely culprit in MS and he didn’t really pin point either, but I could tell that he’s definitely focused on CPn. I now wonder if he thinks that the myelin or oligodendrocytes are infection targets.

Prescriptions

We got 4 scripts which I’ve submitted to our health plan’s mail order pharmacy. We are not rushing because Dr. Sriram recommended waiting until after the holidays so that if we have any questions or problems we can call.

Kim is to start with Rifampin daily. Then if tolerated, add Azithromycin after 2 weeks. Then if tolerated, add Flagyl after 2 more weeks. Then add Sodium Pyruvate after 4 more weeks. The Flagyl is to run in 15 day pulses. Half the month on then half the month off. I asked about the Sodium Pyruvate and he said that he’s not entirely certain how it works, but it seems to help get the bug more out in the open so it can be killed. He sounded like an army general when he said this. He said that she might have a herx reaction and that we should call if she gets a rash.

He also looked over the supplements. He wanted to know which ones we thought were important and we told him about the USANA Proflavinol that we feel is essential. We made it clear that its impact is not realized through any other vitamin C supplement we have tried. He didn’t seem to feel that most of the supplements were necessary. He said that he thought Kim was taking ok amounts of B-12, NAC and Vitamin D. We didn’t talk too much about supplements. I did mention that the supplements we had listed were based on David Wheldon’s recommendations. Dr. Sriram said that it had been a while since he had talked with Dr. Wheldon. Part of me was expecting that Drs. Wheldon, Sriram and Stratton talked on a regular basis, which does not seem to be the case. In hindsight, I’m sort of confused by this observation.

We got a 6 month supply of prescriptions and he said to see how it goes. So, the next appointment and continuation on the protocol seem to be sort of up in the air. I wonder if we should be trying to get on his calendar after 3 months.

A Warm Fuzzy

I told Dr. Sriram about how Kim and I figured out how to reduce the amount of sting sensation she gets from her Copaxone shots. He was interested and I think he had the nurses in his office check out my write-up on it that is posted here at TIMS. When we left the nurse told us that they were photocopying it to add to their patient literature. That felt good.

When I Do What?

Now that we are actually looking at acquiring our very own antibiotics, I’m unclear about which ones to take when because if you take the wrong ones together you might turn into Sponge Bob. Seriously, the chronology of an “ABX Day” needs to be clearly stated here. It’s a problem I’ve run into so I need to document the answer here.

Here's what we’ve come up with so far (I won't list all the supplements, just the ones that I think have impact on the timing concern):

8:00 am: Provigil, Rifampin, Azithromycin, Flagyl (with lots of water)
12:30 pm: Lunch
12:45 pm: Supplements; including calcium, magnesium, acidophilus.
4:30 pm: Rifampin, Azithromycin, Flagyl (with lots of water)
7:00 pm: Dinner
7:30 pm: Flagyl (with lots of water)
10:00 pm: Supplements; including calcium, magnesium, acidophilus and charcoal (if taken).

How’s that look?
We are excited!!!!!
Ken
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Postby MacKintosh » Mon Jan 07, 2008 3:08 pm

Ken, Thanks for the travelogue; it helps to put a human face on this process. I've heard of Jack's, and it's well-regarded by barbeque fans.

Congratulations on your many successes, especially in light of that one noticeable low spot at Thanksgiving!

I see nothing wrong with your regimen, but Sarah's input will be more helpful. (btw, I got the impression DW and Stratton are in touch, remember their co-authored paper, but not so much Sriram.)

My schedule is:
0800hrs, doxy 200mg, D, C, E, A, NAC, Fish oil, acetyl l-carnitine, and m- w-f azithromycin.
1800hrs D, C, E, NAC, Fish oil, iron.
2200hrs is magnesium, calcium, B complex and melatonin.

I suck on sublingual B-12 all day long.
When I'm on a flagyl pulse, I take 750mg with morning pills and 750mg near bedtime.

I'd be interested to know what Sarah's still supplementing with, now she's dropped the antibiotics entirely, but that should probably be a new topic. This one is too delicious to dilute!
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby gibbledygook » Tue Jan 08, 2008 1:16 am

Well, I'm pleased Sriram is so conservative as I can vouch for the fact that the CAP doesn't work for everyone! At least the CAP with only 5 day pulses. I'm interested that Sriram is recommending 15 day pulses. I should think this may be more effective than the 5 day pulsed regime.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby SarahLonglands » Tue Jan 08, 2008 10:15 am

Hi Ken, I was wondering when you would get to the end of this particular long road!

It was good to hear about your visit in such depth: the small pokey office and old and worn bag seem to link Sriram, Stratton and DW! Apart from that, Mac is right in what she says: Drs Sriram and Stratton are in communication very often, Drs Wheldon and Stratton also, but Drs Sriram and Wheldon not so often because there are no trials involved here.

Again, like Mac, I see nothing wrong with your daily schedule, except that if you are taking charcoal, it needs to be taken on an empty stomach to be effective. We both have tried it, at Stratton's suggestion, but never take it now. Well, I don't, anyway and David rarely does. When I was taking rifampicin, roxithromycin and flagyl, I took all off the first two at 8.00, with some supplements, other supplements with lunch and cal/mag after dinner, then acidophilus last thing. Flagyl divided into three, along with whatever I was taking with breakfast, lunch or dinner.

Most of the supplements aren't strictly speaking necessary, but are a good idea, because you can't take into account everyone's diet, especially in these fast-food, over processed days. Take vitamin d as one example: I was looking up the food produced in old people's homes, where obviously, osteoporosis is very common. Bearing in mind that many of these people don't see sunlight from one month to the next, the vitD in their diet is very lacking.

One of Sriram's other areas of research is in leprosy. When you next see him, and you are completely at ease with the protocol, you might ask him about that, because it is absolutely fascinating. As for me, I must ask him how he is getting on with is watercolour painting. His wife got him to start it to relax his mind!

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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No Offense to Rica ........

Postby notasperfectasyou » Fri Feb 01, 2008 10:19 am

Schedule

Thanks Mac and Sarah for looking over the schedule. Kim’s got the charcoal in the bathroom and she takes it in the middle of the night when she wakes up. This seems to be workable since its several hours away from nighttime probiotics and morning antibiotics. I will be sure to ask Dr. Sriram about leprosy next time we are in Nashville. I’m actually more interested in his painting. I don’t know if I’ve mentioned this, but through my childhood and into my freshman year at college I studied art. I was, emphasis on was, an art major. There is a story that goes along with that. I just might tell sometime. There is something magical that happens when one artist meets another artist. It’s hard to explain, but non-artists don’t get it. Then again, I think I’m much better at fighting MS than I ever was at fighting with clean unspoiled white surfaces.

Kim’s Carousel

Kim had been on ABX for about 3 weeks when she had time to sit down and write a blog entry at CPn Help. She saw immediate improvement beginning on the second day of Rifampin!

1) She could walk way better. She did not need her cane anymore. Kim even walked to a neighbor’s house and back.
2) She had bladder control. Became confident that she did not need to wear pads.
3) Her long standing acne concern was clearing away.
4) Her sensitivity to light (eyes) had improved so that she did not need to wear sunglasses so much.
5) Kim began feeling the stinging sensation of her Copaxone shots. (note: we stopped doing the massage about 3 months ago when it became clear that she was not feeling the sting. We continue to not massage so Kim can gauge how much the feeling in her bottom is returning)
6) Kim started having sneezes a few days ago. Don’t know if it’s a cold (likely) or an allergy (unlikely), but Kim’s not had sneezes within memory.

During the 2 weeks we planned a day trip to a nearby ski area (Massanutten) and worked with Mark at Therapeutic Adventures on getting Kim an adaptive ski lesson. Kim was pumped!

Then Kim started Azithromycin in the third week and she slowly started losing many of her new found powers. By the time we came up on our ski day, she was concerned, but still determined. Kim had also lost a fair amount of use in her left hand. Mark was amazing and I highly recommend that if you want to try skiing, you contact Mark. He really knows his stuff and he’s been doing this for years. Mark got Kim on a slightly modified pair of skis and took her up the chair lift, immediately! While equipment modifications did help, I got video of Kim standing on the skis and sliding down the slope. This was so amazing. We had never enjoyed a day at a ski resort more. Two notes, first the lessons were not expensive, in fact it was less than the cost of my own rentals and lift ticket and second, Kim’s determined that next winter she’s going to make it down with less assistance.

By the end of the third week all of Kim’s new abilities had dissipated and she was actually walking worse then when she started. At the end of the fourth week, beginning of the fifth week Kim is to begin a 15, fifteen day Flagyl pulse.

On the other hand, yesterday, Kim felt better and she started her period. So, as the carousel spins, so to Kim’s ups and downs bring disappointment and elation.

”Farm”acy Mayhem

We first tried to get Kim’s mail order pharmacy to fill the prescriptions. After faxing them (like we were told) we had to wait 3 days for them to be “received and processed”. Then we learned that we couldn’t fax them, but they had to come from the doctor’s office directly. Then we had to wait another 3 days and then they couldn’t find them. By then I had gotten frustrated and taken the Rifampin script to the grocery store and I got 60 capsules. Then the online pharmacy said they couldn’t fill any of the scripts because we had gone to the grocery store (throw arms up in air, rant and say not very nice things about health plan’s farmacy). Days and faxes later the new reason we couldn’t get them was that we had gotten married and Kim’s name was different in their system. Funny, since we have been getting prescriptions in Kim’s married name for over a year. Now we have an abundance of Rifampin.

Then, dare I say, we tried to get Azithromycin. The mail order farmacy said that they had it all figured out after Kim spent half a day on the phone with them coordinating her name, the scripts and duration of the refills. We only had to wait a few days and instead of getting a FedEx with three dozen Azithromycin’s, we got a letter saying that Azithromycin could not be filled for more than 4 pills at a time. MOO! Kim got back on the phone and called the mail order farmacy and Vanderbilt and I got fed up and went back to the grocery store which gave me 6 Azithromycin’s and an explanation that they would track the script internally to ensure that Kim got 12 refills of 6 pills. I also learned that primary and secondary insurance rules (Kim has 2 health plans) don’t apply to prescriptions. If you have 2 plans, give the pharmacist the card for the better plan. This is how we got 6 instead of 4 and a lower copay.

So today we’re up to Flagyl. The original script and instruction from Dr. Sriram was to take a 15 day pulse. We got 63 pills from the mail order farmacy which works out to be a 3-month 7-day pulse. I sent a fax to Vanderbilt this morning to try and sort this out because the pharmacist I called read the script they got from Vanderbilt as a 7-day course and not a 15-day one. More on this as the story unfolds.

For added bonus. Dr. Sriram gave Kim a script for Sodium Pyruvate.

Dr. Sriram wrote:Take 1.5 Grams 30 minutes before Azithromycin.


Kim is to start this after 8 weeks and NO pharmacy knows what the stuff is. Nor does the Vitamin Shoppe or GNC stores. Calcium Pyruvate yes, Sodium Pyruvate no. Kim called Vanderbilt and they said they would fill it and mail it to us.

Questions

1) If you read my posts you know that Kim and I have this thing about USANA Proflavanol and how its absence in her supplementation seems to result in impaired walking. My discernment on Ascorbic Acid is here at TIMS. Now I wonder, if the benefit of the Proflavanol is that it somehow suppresses the CPn. If so, then might it be a good idea to stop taking it to “bring the CPn out” where it can be ABX’ed?
2) Does everyone have the same complication we had getting a month or more supply of Azithromycin?
3) Daisy or anyone else, how does the course of a Flagyl pulse compare with a Novantrone infusion? What should we expect?
4) Can someone explain the biology of the die off and how this causes increased disability?

My Own Mind

So I have this idea that floats in and out of my head. Two years ago Kim and I did the MS Walk with her scooter. It’s a fundraiser for the MS Society of the National Capital Area that’s held out near us in Reston, Virginia. The shortest route is 3 miles. After the first week of Rifampin I was certain Kim was going to just keep improving and that by April, three miles would be easy. But, I can still think about it for the 2009 walk. One idea I had would be our walking with some sort of custom tee shirt that might say something like, “I had MS”. I just can’t shake loose of this idea. Maybe we’d have something to handout to folks as we walked. We would of course do this when Kim can walk 3 miles. What a goal!

Then I have another thought. I happen to know that the MS society is about 3 blocks from my office. I had to go there to sort out a registration issue with the walk. I wonder about asking them is they’d rather wait until Kim is cured to work on a story or if they’d like to get to know her as she is in the process of being cured. I ponder and ponder. I’m obsessed, I’m positive and I’m grateful.

Update

I got an e-mail back from Dr. Sriram today.

Dr. Sriram wrote:Flagyl 7 days on and 21 days off, if she tolerates her meds, we can then increase it to 15 days on and 15 days off. Sriram


So Kim will do 7 days of Flagyl in her first pulse and then we’re to report back to Dr. Sriram how it goes. I'm still working on the Sodium Pyruvate question.

Kim’s first Flagyl will be today. We think we’re ready. Ken
Last edited by notasperfectasyou on Fri Feb 01, 2008 5:38 pm, edited 2 times in total.
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Postby Loriyas » Fri Feb 01, 2008 10:55 am

Ken
Because of Kim's experience with the change in the prescription of flagyl I made a call to Vanderbilt yesterday to see if I am in fact, supposed to do 10 days as he originally presribed or if that is going to change. I'll let you know when I hear back. I am to start flagyl next week.
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Postby MacKintosh » Fri Feb 01, 2008 5:09 pm

Ken, A couple of easy answers to tough questions.

The likely reason Kim is experiencing fallback from her improvements is simply that die-off from cpn bacteria will create inflammation. Inflammation is the major cause of our MS manifestations. As the cpn load is lowered and eliminated from the body, there is literally more space for healthy cells to move in and also there is less inflammation. Whatever 'whispers' of improvements Kim has seen and misplaced, are foretelling of the recovery to come. We see this ebb and flow of recovery consistently. Each time the recovery comes, it comes back longer, until it stays.

Azithromycin. Good grief! I last refilled my prescription for 13 pills (one month's worth) at a new pharmacy. It was the second time they had dispensed to me. The pharmacist held the bag back from me, as if it were a dog treat and I the dog, saying, "This is not usually refilled. I don't understand why it's being refilled and it's not given three times a week; it's supposed to be a straight five day course."

Argggghhhh!!! I've been doing this over two years now. I am tired of educating pharmacists about cpn, but I did it again, because it's SO important to get the word out. He was fascinated. I hope my frustration netted another believer. I'm sure whoever refills it next month will throw up another roadblock.

Ah, yes, the never-ending battle for truth, justice and the American way.... (Oh, that's a different superhero from Cpn-Girl. My mistake. :wink: )
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Dang Schedule Thingy

Postby notasperfectasyou » Fri Feb 01, 2008 11:16 pm

Thanks Mac, I'm going to read up more on this stuff. I didn't have that problem at my Giant grocery, in fact the pharmacist was fine when I told her Dr. Sriram's scribble was the number 6 for the refills. Nothing like being prepared with the quick response. She thought it was a 1.

Schedule

Adding Flagyl has thrown my obsessive nitpicky detailed micromanaging overaccountifiyed brain in a tailspin. I sat down and had a thinking process and you can maybe tell that I'm feeling punchy because it's past 1 am and I'm just now getting this typed up and Kim is now up because she was knocked out all evening with Flagylence. So here's what I rehashed. You can eat food with Azithromycin and Flagyl. You don't want to take Calcium, Magnesium, B and Probiotics with Antibiotics. You can't take nothing with charcoal.

Sometime in the morning, Provigil and Rifampin

at least an hour later, 1.5 Flagyl, Lunch, Azithromycin and Supplements

at least 2 hours later, Rifampin

at least 2 hours later, 1.5 Flagyl, Dinner, second chance to take Azi&Supps

at least 2 hours later, Supplements that can't be taken with ABX and Snack before bed

at least 2 hours later when waking up in middle of night, Charcoal


That's it. I got rid of all the times and now it's flexible and chronologized. You know I'm in a good mood when I start making up new words. I get to crash now. yippieeeee.
Ken
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Postby MacKintosh » Sat Feb 02, 2008 12:13 am

Ken, My personal favorite is 'overaccountified'. :wink: Get some sleep, both of you!
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inflammation from cpn die off

Postby jak7ham9 » Sat Feb 02, 2008 6:22 am

Well now that I am following along on Kim's tail I am thinking that the rifampin might be causing more die/off/inflammtion than normal because I am sollen and stiffer than usual at this point. Yes this unquestionably effects the walking. I would love to find something to reduce the inflammation. I will do next flagyl 7-10 day at the end of next week.barbara Y
MacKintosh wrote:Ken, My personal favorite is 'overaccountified'. :wink: Get some sleep, both of you!
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Postby SarahLonglands » Sat Feb 02, 2008 10:37 am

Oh, so you started out as an art major, did you, Ken? Well, you better had tell the story sometime. First I exclaimed "Ken , you sound just like an accountant" to which you replied "Thanks for the compliment," me not knowing at the time that you actually were an accountant, now I discover that you thought of taking up art. I hope you still practice as a side-line, which is what I should have done.

However this blog is about Kim and her treatment, so.......................
Its amazing that she saw improvement of function after two days of rifampin: that really doesn't make sense and she is the first person I have heard experience that. Sheer relief about finally getting going might have something to do with it, but all it seemed to do with me, when I started it, was make me walk round in circles. That was, I admit, partly stopping one of my immunomodulatory abx (doxy) to start rifampin, not immunomodulatory at all.

Then onto azithromycin: now you get the disappointments mixing in with the elation. You will get many of both over the coming months, elation eventually gaining the upper hand.

And now, flagyl! After this the rollercoaster gets really going!

Hopefully after that will come the MS walk with Kim wearing her "I had MS" T-shirt. Maybe 2009, but if not, 2110. It all depends how long has passed since she would have been able to walk that distance before.

Ken, about your "other idea," how about doing regular videos of Kim improving and her talking about it?

Sarah
Last edited by SarahLonglands on Sat Feb 02, 2008 5:24 pm, edited 1 time in total.
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby MacKintosh » Sat Feb 02, 2008 1:18 pm

Ken, Maybe you'd want to try what I've done. I had business cards printed up and give them to people who I think could be helped by knowing about cpn treatment. The only thing printed on them is the web address of cpn help. This way, if they're affected by something other than MS, they aren't put off by the 'this won't work for me' mentality.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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