This Is MS Multiple Sclerosis Knowledge & Support Community

Oh, yeah, I will share the art story when I’m feeling a desperate moment and Kim seems to be going through a repetitive experience. I’m all over the shirt idea; the right time will come in the months to come. I need to see what Kim thinks of the video idea, sounds brilliant. Mac, I love the card idea to go with the shirt idea.

Pop Quiz

What did Kim do to get relief from Flagyl stomach crampy and burning pain?

a) Take Flagyl in the middle of the meal to sandwich it in her stomach
b) Drink boiled rice
c) Take some chlorella tablets
d) Drink more water
e) Nosh on nori

Ok, big hint is that I’m half Japanese and Michele on CPn recommended Chlorella which I Googled and learned that it’s seaweed! As an amateur sushi chef I have the seaweed paper in the house, nori. It’s the sheet-like stuff that is used to make maki rolls. I toasted up a sheet by fanning it over the stove until it was more dry and crunchy (you need to fan it over the heat to do this – there is a technique. About 3-4 minutes). Then I gave Kim the sheet of seaweed. She looked at it, then she looked at me as if I were Joe Rogan. It calmed her stomach. Hooray!

The other idea’s also came from the CPn website, but noshin’ on nori worked for Kim.

Pyruvate

Dr. Sriram got back with me. Calcium pyruvate is an acceptable substitute for sodium pyruvate. Kim is to take 1.5 grams 30 minutes before taking Azithromycin beginning in week 9, which would be immediately after her second Flagyl pulse is completed.

Bananas

Kim hates taking the Flagyl. She’s got to get the taste out of her mouth right away. Our home is now devoid of bananas. Now she’s working on a bag of Twizzlers. I want to give my own perspective here of how this stuff seems because the build up we’ve read really makes one fear this stuff. Now if you know what Novantrone does, it’s not so bad. Novantrone is way worse. You can’t drive for days after Novantrone and you just spend hours and hours in a drunken-like sleep deprived state of not really knowing what’s real and what’s dream. Novantrone leaves you nearly comatose for about 4-5 days then you slowly comeback.

Flagyl seems to be more like a long term game of outdoor winter quarters. You slowly get sicker and sicker like you’re getting a cold or flu and you slowly start feeling drunker and drunker over the 7 day pulse. So today, day 6, Kim seems to be like she has a severe flu and she’s sleeping a lot, but she can drive, but doesn’t want to and she is foggy and wobbly like she’s on her second six-pack. All this and no bananas. BUT WE HAVE NORI!!! Kim’s excited, like a real low key “is it almost over”, that tomorrow is her final day of Flagyl for a while. I think 15 days would not have worked, though I could envision her doing 8 or maybe 9. Ken

Hi Ken....thanks for the updates! Iv'e been keeping track of you guys (in a stalker kind of way!)

I think it was MacK who originally suggested slathering the flag with jelly...Wasn't that you MacK? Well, that certainly helped Jim get his down without the big "BLLLECKK" that seemed to follow each swallow.

I wonder why the Vandy docs aren't using Tini? That would be interesting to know.

Boy, do I wish I knew about Okinawan chlorella when I lived there...sure would have stocked up on it and/or taken a ton of it while there. I think it is a wonderful elixir and glad to hear Kim is taking it.

Keep um coming, Ken!

They aren't using tini because it is only quite recently off patent and they were only just used to flagyl, comparitively. Its been off patent for longer here, but I had to really try hard to get a prescription for tini from David. Doctors, even experimental ones, are conservative creatures at heart.

As for nori, I think I like the sound of that, rather than jelly. Shame I don't take anything noxious anymore! (Well, apart from selenium, that is.)

Sarah

Are We There Yet?

It takes us about 4-5 hours to drive to Mom’s house. The boys wait until we’ve been in the car for about …… oh, an hour; then it starts – “Are we there yet?”. “Daddio, how much longer?”. “Daddiyyoooooooo, I’m bored”. If you have kids, this may sound familiar.

So now Kim’s beginning the patience test. She wants to know when she can stop using Copaxone. She wants to know when her hand will start working. She wants to know when the aches and pains will stop. She wants to know when she’ll walk better. She’s having some emotional swings, mostly taking the form of frustration with stuff that doesn’t workout to her expectations. I tell Kim we’re only just getting started, which sounds nice, but I know it’s how she’s feeling that matters. I’m listening patiently; I’m always just a hug away.

What’s interesting to me is that much of the side effects of CPN die-off could easily be confused with an exacerbation. Weird crap can happen in an exacerbation and die-off isn’t to terribly different. It seems to me that both are grounded in inflammation brought about by one thing attacking another thing in the CNS. Along this line of reasoning, I think this is a problem for folks in the “learning” stage. It’s quite easy to learn about Copaxone, Avonex, Rebif, Betaseron and Novantrone. It’s a pain in the ass learning about ABX from scratch. But the rub is that if you really don’t prepare yourself for ABX, emotionally AND intellectually – you are more likely to become dissatisfied with the therapy.

I believe, emotional and intellectual preparation for ABX treatment is critical to its success.

Emotionally, you need to be ready for symptoms that not only make you feel worse and less healthy, but they can also scare you in their similarity to exacerbation symptoms. Kim’s done Novantrone and I think that ABX is easier. But, if the die-off side effects of ABX was the worst Kim had ever felt, I think it could open the possibility of second guessing. Also, the protocol heightens one’s emotions, which can intensify emotional experiences while on Flagyl. Kim’s more prone to tears, frustration and anger. At times she feels the burden and I realize; although I can talk the talk, Kim has to walk the walk. You need to have faith in what you’re doing in order to do this. You have to have resolved in your mind that this is the one-way ticket to health and you’re going to have to run the length of the railroad trestle nonstop else you get hit by a train. You must be relentlessly committed.

Intellectually, you need to know how it works and you need to have confidence in your knowledge that you are prepared. You know that there will be tough times. But, you’re ready for them, you’ve planned in your mind that these things will happen. You know to expect down times, painful times, you know and therefore there will be no surprises – You’ve learned about the train, the trestle, the footing and your own ability to walk, run or crawl the distance. You can’t leave room in your preparation for chance or “winging it”. You need to know what supplements you’re going to take and why. You need to have a plan for what you’re doing that includes not planning a family vacation during Flagyl week.

So along these lines, learn about the side effects so you know them from an exacerbation. Know what to expect and more importantly, know enough so that you don’t second guess yourself.

The Female Advantage

Kim and I have a little debate of sorts. While neither of us easily embarrass, Kim senses that folks are sensitive about certain things and I don’t necessarily think it matters. I mean, how can you leave off the list of MS symptoms something that’s important? I think knowledge trumps modesty. Kim has deliberately excluded stuff from her posts and we’ve gone back and forth about it. So if you blush easily, don’t read anymore.

Checklist

You’re still reading aren’t you? You can tell Kim that you think it’s great that we can have an honest chronicle of her healing. I have no idea how this will work, but nothing happens until we try. I want to have some sort of checklist to reflect how Kim is doing. I hope to improve this as we go.

Walking: There was a high in the first week of protocol on Rifampin when Kim was walking …….. like completely normal. This lasted until she started Azithromycin which brought her back to needing a cane. During Flagyl week Kim has been less balanced. Kim has found that if she swings her arms, she can walk more deliberately. We keep a cane in the car; just in case we need it.

Peeing: In the months leading up to starting ABX Kim was buying more and more pee pads. She had more frequent “incidents” and pee pads became a staple item to have with us. Bladder control is greatly improved now which for the most part is maintained. We still have them with us incase we are going to be out for several hours, but Kim’s had way fewer accidents and the trend is promising. I’d also add that Kim seems to need to be more careful when on Flagyl.

Copaxone Sting: We have real data on this. I keep a chart of each shot, where Kim got poked, how it felt and how much sting there was. In the months leading up to ABX, Kim lost all sensation of the sting. Prior to that she had sting ratings mostly in the 2-5 range on a completely subjective scale of 0 (no sting) to 10 (torture). Kim did not get sting back until her first week on ABX, taking Rifampin. Then the addition of Azithromycin caused the sting to go away again and then after the first Flagyl pulse it came back. The stinging now is only in the one-half to 1 range, but Kim is feeling it about 2/3’s of the time. Note: For now we have discontinued using the Sting Reduction Technique so we can track Kim's progress.

Orgasms: It was very frustrating for Kim to lose them which coincided with the lost of Copaxone sting. I should note that we do all Kim’s Copaxone shots in her derriere and the loss and return of orgasms has followed the pattern of the Copaxone sting. The only key difference seems to be that orgasms are either working or not working. The intensity of them does not seem to be impaired when Kim has them. We are not subjectivbely measuring and tracking this.

Body Heat: Kim felt cold all the time before she started ABX. She’d need jackets or sweaters and gloves and a hat. The ABX seems to have helped Kim to feel warmer most of the time. She does start to feel cold when she’s taking Flagyl. We’ll see if she feels warmer in her post-Flagyl week.

Left Hand/Leg: Kim’s left hand has not been as strong as her right hand and especially when she is in the Flagyl pulse, her hand becomes nearly useless. Similarly Kim’s gait has always been on the left side. During the Flagyl pulse, Kim has less control over her left leg.

Kim Tube

At Sarah’s suggestion we have been videotaping a weekly 25ft. walk. The first walk was two days following the completion of Kim’s first Flagyl pulse. Kim complained that I was being mean to her because I wouldn’t let her hold onto countertops and stuff. She used two trekking poles and she walked the 25 feet in about 60 seconds. This was slow and definitely related to the Flagyl. Unfortunately we did not do timed walks before this; with the exception of the one at Dr. Sriram’s in December which I believe was about 25-30 seconds. Though I knew at that time that Kim could walk better; I think she was anxious about finally making it to the appointment.

Kim’s second weekly walk was vastly better, no sticks! She walked 25 feet in 11 seconds. In the third week she cleared the distance in 10 seconds. In the fourth week Kim walked 25 feet in 9 seconds. The fourth week walk was on day 3 of her second Flagyl pulse. I’d say that Kim’s a little wobbly in these walks. She swings her arms to help her with her balance. I think she’s slightly improved since starting ABX. Her most recent, fifth walk was two days following the completion of her second Flagyl pulse. She walked the 25 feet in 17 seconds, unaided. When compared to the same time a month ago, Kim has clearly improved. Isn’t this exciting!

What’s interesting to me is that much of the side effects of CPN die-off could easily be confused with an exacerbation. Weird crap can happen in an exacerbation and die-off isn’t to terribly different

In people with rr ms is there a difference in an mri that is taken during a relapse as opposed to one taken during a remission and if so could this be used in a case like this to determine weather it’s die off from abx or it’s ms causing these conditions.

Goodness Robbie: if Kim had to have an MRI as often as she does a pulse, she would never get it paid for by her insurance!

I had my second follow up MRI done at short notice, so concurrent with just finishing a pulse. This worried me but it had to be done on the same machine as the previous two, so I had no option. The results were nothing new showing at all, many existing lesions becoming fainter, some of the newer ones even disappearing so obviously how I was feeling was not an exacerbation.

Sarah

Robbie, I'd be interested to know the answer to your question, but I don't see much use for it except in clinical studies. By the time you have the MRI appointment, see the results, have it interpreted... well, the phase has likely passed, lessened or changed.

And the expense! Yikes! Is it worth it, just to answer a question that will occur many times over the course of abx treatment? Even with great insurance, I still paid nearly two hundred dollars per MRI.

Ken, Somehow, a clinical recitation by you is more palatable than Kim running through her personal functions, if that makes any sense. It's obvious you've gone out of your way to edit and parse your terms, which I'm sure she appreciates, as well. I definitely know there are things I simply do not say on a public forum, so I empathize with her.

It's very strange how we bare our souls 'anonymously' here, without benefit of face to face exchanges. Bodily functions, details of relationships with friends and caregivers, nothing seems off-limits. For the braver souls, thank you, because of course all of us want to know all the details of this treatment, yet some of us can't bring ourselves to share every minute detail with others. (I'm sure it all evens out in other ways.)

That being said, your chronicle is welcome news! Kim's improvements are many and the biggest one, which you don't recognize (forest for the trees) but we observe regularly, is that she is impatient to improve. You comment on it, but don't yet see that it's a huge sign of improvement.

Only in the last few months some of us have started to comment on the pattern of this. I think it took going through the protocol, coming out with perspective and no brain fog, then observation of those at the beginning stages of treatment, to get to this point. Now several of us will remark here and there about how 'you're getting better; you're impatient'. (It's not a mark of flagyl pulses, either, which brings on a different mental attitude, as you and Kim are seeing.) It's a general feeling of 'let's get on with it, where's my next improvement, what have you done for me lately' and it indicates a sense of well-being and recovery of basic health that there's no measure for. This is a telling sign. It's an invisible corner that's been turned. And there's no going back now! (aren't you glad?)

When one is first diagnosed with ms the mri shows lesions either active or not hence the term relapsing/remitting. So a person that is on the abx regime and feeling bad because of die off then if that person at the time this die off and feeling like shit had a mri done then it would show no activity in the brain or spinal cord lesions and this would put an end to the die off and the relapse confusion. One picture!

Robbie, I think, if you want to explore this in depth, it should probably have its own topic.

Robbie, I answered this above:are you taking no notice of me?

Sarah

And I answered at great length, then deleted it, as I think Ken and Kim's thread should be separate from what could be a long conversation on the matter.

So do I, but I will post something in my blog later.

Ken I agree with Mac about your clinical recitation, so I'll go through them one by one:

1) Like Kim I had a high at first, but on just doxycycline, but it didn't last into the roxithromycin. I was always less balanced on a flagyl pulse, until I stopped getting reactions. Because I was so bad when I started I do even now sometimes use a trekking pole out of the house, because I find that if I have to stand still for a while, I lurch when I get going again. (I never, though, even at the beginning used a cane in the house but relied upon counter tops and chair backs instead.)

You always can walk better if you swing your arms: it aids balance for anyone.

2) Bladder control improved greatly quite quickly but even the last time I took flagyl, last June, I had to be careful!

3) Didn't do it.

4) I should hope you aren't subjectively measuring and tracking this, but for me, I couldn't do it before I started abx and for a while afterwards. All is now right, though.

5) The second winter of abx I realised that my feet weren't cold anymore. My studio faces the cold east winds when they are blowing and this house is old and drafty, but I wear half the amount of sweaters now, fingerless gloves for painting likewise.

6) With me it is my right side. My right hand was virtually paralyzed when I started and still can give out when very tired or stressed, (or when I was on flagyl!)

I'm glad you took up my suggestion of videotaping the walk, but I think I might have complained at as often once a week. You will find it better though, than just relying on what you write down because its what you think you see or Kim feels.

Sarah

Replies

I actually don’t think of Kim and myself as being too self conscious. I have no problem with running to the store to buy tampons. There might also be something desensitizing about peeing your pants in public. In any case, I hope I’ve struck a balance here. Kim and I don’t need to be anonymous, we’ve already had phone chats with some folks who wanted to talk.

Kim holds on to all kinds of stuff walking around the house. I’d almost not notice unless I’m really paying attention to it. I really started to notice after we started the videotaped walks. Once a week is often, but it also establishes a rhythm. DVD’s are cheap. After we finish the first disk, I plan to watch it repeatedly for subtle details.

A Rough Month

Kim got a cold. Having a cold didn’t seem to have any immediate impact on Kim. Then again, we thought this was a sign that perhaps Kim’s immune system was more regulated. Then again, this is just the time of year for folks to get colds. Then again, wouldn’t all the ABX have some protective effect from a cold virus? Kim slowed a little as the cold resolved, but then ……

Kim got a yeast infection. I think this took Kim a few days to pin down what it was. Walking became somewhat more wobbly; however Kim completed her most recent 25-foot walk in just 8 seconds. We did a midnight run to the pharmacy for “stat-stuff” and the infection seems to be clearing …… just in time to start Kim’s third Flagyl pulse. Kim’s been eating yogurt along with increased probiotics with at least 2-hours of separation from ABX. Kim’s still taking about 8-10 charcoal caps at night.

Last month, on the eve of Kim’s second pulse, she was walking much better.

Questions

Is there reason to link the cold to the yeast infection?
Does either the cold or yeast infection explain the retracement in walking?
Is there a “best” way to handle having a cold or yeast infection while on ABX?

Right Now

Kim has completed the first day of her third Flagyl pulse.

Walking: Definitely less stable since pre-pulse a couple days ago. Cold/Yeast Infection seemed to have taken a small bite out of stability even before that.
Peeing: Kim still seems to be doing well here.
Copaxone Sting: The yeast infection seems to have desensitized Kim and she has not felt the Copaxone sting for about a week.
Orgasms: Yeast infection.
Body Heat: Kim was feeling colder while she had a cold, but seems to be improving. Then again the weather is getting to be more springish.
Left Hand/Leg: Kim’s had more of a gait since having the cold.
Brain Fog: The Flagyl definitely brought this back in a forceful way.

Other Notes

We’re getting a dog! Hopefully soon, but it all depends on when the litter and breeder work out stuff. We know we want to get a Goldendoodle. We got a giant cage, which Kim calls a crate, which I said was just a nice name for a cage. How long until you think one of the boys locks themselves in it? We also have Kim’s second Vanderbilt appointment booked in June. We’re hoping to turn this one into a mini-vacation with the boys. If you know of any great activities for the boys on our excursion, please let me know. Just note, they are boys, they don’t want to see Graceland, unless it has live dinosaurs. Ciao, Ken

Oh, you two are just the best! A vacation! (What is a vacation, pray tell? I thought that was when you could spend FULL time with your contractors as you resurrect the hundred year old house, rather than PART time. )

Sounds like solid, noticeable improvements here. Yuck, yeast infection. Been there, pre abx. Not fun.

I have friends out Vanderbilt way, so I'll email and ask about boy-type activities. (They have a six and a three year old.) GO KIM! (And thanks, Ken.)