A CCSVI Patient Log: All About Steve

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Tetracycline antibiotics - Warfarin interaction details

Postby radeck » Tue Oct 13, 2009 9:02 am

For what it's worth, here's word from drugs.com on the interaction. It isn't a problem as long as the INR is monitored closely and anticoagulant dose adjusted, if necessary:

"Tetracycline antibiotics may enhance the action of oral anticoagulants by inhibiting the production of vitamin K producing bacteria in the GI tract. MANAGEMENT: INR should be monitored whenever a tetracycline is started or stopped, and the patient should be observed for signs of bleeding. An adjustment of the anticoagulant dose may be necessary. Patients should be advised to notify their physicians if they experience any signs of excessive anticoagulation, such as unusual or prolonged bleeding, bruising, vomiting, change in stool or urine color, headache, dizziness, or weakness."
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Postby mormiles » Tue Oct 13, 2009 9:36 am

Radeck, I think you "hit the nail on the head"---Chlamydia pneumoniae loves iron (which is true for bacteria in general) and hates oxygen, and a hypoxic brain with iron deposits does make for a a cozy nest for chronic infection. Like you, Steve is chronically infected with Mycoplasma pneumonia as well, but I don't know very much about Mpn.

Steve's abx regimen was doxycycline+azithromycin+flagyl pulses for almost 3 years, but he was switched to minocycline+clarithromycin+tinidazole pulses a few months ago. Dr. Dake knew Steve was on antibiotics and was fine with Steve continuing his usual regimen. In fact, the nurses had strict orders to keep him on schedule even while he was in recovery. Dr. Dake stressed that consistency was the overriding factor. By the way, Steve is getting "industrial-strength" doses of probiotics at intervals far removed enough from the abx doses to do him some good.

LR1234, Yes, I revisited Alex's log and took comfort there.

Joan, You are so right. I got read "the riot act" yesterday by Steve's internist who is handling the INR monitoring---and I deserved it. Back in August, Steve's neurotologist instructed me to give him a pulse of Tindamax one week post-surgery. That's excellent advice...as long as coumadin isn't part of the picture. Dr. Dake never knew Steve would be getting a Tindamax pulse one week later. The internist cautioned against the pulse because of the coumadin. And then I went and did it anyway---I had my reasons, but they weren't good ones as I now know. I figured it would be OK since Steve was already on two other abx. Also, I don't respect and don't trust Steve's internist. She used to be mine too, but I "divorced" her. In my estimation, her opinion of what people with MS need to do is to retreat to a corner and fall apart. She thinks that if it's not FDA-approved, don't do it no matter how cogent it is. She's against everything about Steve's MS treatment, she can't stand me either, and I've never forgiven her for telling Steve he had MS over the phone. When she confronted me on the phone yesterday, I "fessed-up" and she said Steve's INR had jumped from 2.7 to 3.4. She more or less said that if something happened to Steve, it would be my fault. She did alot of whining and threatened to dump Steve on the neurologist, but I promised compliance and she relented. I had three nightmares last night about death and danger...mea culpa, mea culpa, mea culpa!

HEY EVERYBODY, The good part of this post is this: Late yesterday afternoon, Steve began improving. His clear vision has come back, he has energy, his legs feel a little stronger, and even the bladder control is a tad better. His balance still stinks, but we're hopeful.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Loobie » Tue Oct 13, 2009 1:35 pm

Keep going!!!
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Postby catfreak » Tue Oct 13, 2009 8:10 pm

Dear Joyce and Steve,

Keep posting good things, it very uplifting to to me and others. I hope he gets more and more energy every day!! And the little bad things eventually go way.

Take care and y'all are in my prayers!

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Needled » Wed Oct 14, 2009 5:22 am

Ditto to Cat's note!
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3 weeks out

Postby mormiles » Tue Oct 20, 2009 10:46 am

I wish I had all cheery news. The only cheery thing I can say is that Steve is still cheery. BUT, his improved mood seems to be the only symptom improvement he has held onto for the past several days. All the other symptom improvements are gone. Can't help but wonder which way he's headed....in the footsteps of Alex (gibbledygook), i.e., initial improvements followed by weeks of symptom deterioration followed by renewed improvements?...in the footsteps of Lew (Loobie) who didn't quite get it all fixed the first time around and is on the upswing again since his 2nd go-round?...in the footsteps of Mark (skydog) who is stuck for the moment in a holding pattern while Dr. D ponders on his case due to his initial improvements that dropped off and have stayed that way due to post-op development of new stenoses?

Steve's not depressed, but I'm getting that way. Maybe I feel this way today because I woke up at 1:30 a.m. to find Steve in the kitchen barefoot trying to clean up a broken glass mess. I ran him out of there and cleaned up the glass and the blood, and I didn't fall asleep again till just before get-up time. Thankfully, the cuts in the bottoms of his feet stopped bleeding more quickly than expected. Other than that, he carelessly let one of the dogs out (the one that runs crazy and doesn't want to come back for a long time) just before it was time for us both to leave the house this morning. Add Steve's unintentional full-blown red-light running on the drive into town. (<BOO HOO HOO, OH WOE ARE WE!>) Still giving this day a chance to redeem itself.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Tue Oct 20, 2009 11:21 am

Joyce, I am sorry for the not so good day, and oh my GLASS!!! bad news. Coumadin is not good stuff you have to be so vigilant about normal stuff like that.

Give it time and really after coumadin and follow up, things will settle out and you'll get a feel for where this is going. It is hard to only hope for stopping progression, but that is the most realistic mental line to draw in the sand for those of us with a lot of iron in the brain. But you know if we can stop losing ground we may find with time improvement just from strength that gathers instead of always slipping away. But these first two months are a roller coaster!!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Sharon » Tue Oct 20, 2009 11:58 am

Joyce,
I hope by the time you read this that your day has turned around a bit. Broken glass, bare feet and Coumadin ---oh, my gosh! You must have been scared out of your wits!!

I agree with Marie - the first two months are a roller coaster. You have to remember that Steve is on the blood thinners, his body (and brain) is trying to get used to the new flow of blood. Try to be patient as everything gets worked out.
Marie wrote
It is hard to only hope for stopping progression, but that is the most realistic mental line to draw in the sand for those of us with a lot of iron in the brain.

I have to remind myself that stopping progression was my hope when I decided to have the procedure. Anything more is a blessing.

Take care,
Sharon
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Postby mrhodes40 » Tue Oct 20, 2009 12:15 pm

I can't resist adding that you wouldn't be human if some part of you didn't hope that every little good thing was the harbinger of a miraculous turn around.....

I was very realistic going into this--in my LOGICAL brain :lol: ...

... my emotional brain was another story "maybe I'll just turn around"...my first or second regimen post reflects this as a little bit of foot lift after the ellipse was judged by me to be really great news...as my soul crossed it's fingers that it was the beginning of great things.

After time, 5 months, I do have some very subtle improvements, but nothing anyone would call ''miraculous'' . That having been said, the decrease in spasms I have experienced has resulted in the success of the bio-ness where a walk aide trial before stents failed... so this means I can walk now far, far better than I could because I am suddenly able to use technology I could not before.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby mormiles » Tue Oct 20, 2009 1:50 pm

Marie and Sharon, You can probably guess at how meaningful your encouragement is right now. And yes, every miniscule positive thing that happens launches so many grand hopes even though my wiser self knows better than to let that happen. And Steve...he truly clouds his symptom issues because he can't remember how his symptoms were yesterday, last week, last month, or last year. I never knew anyone so out-of-touch with their own senses; I think he wavers back and forth between giving me very vague answers and just telling me what he thinks I want to hear. He would be relieved if I never asked him again how he's feeling, how he's doing, about this and that symptom. Sometimes I resolve not to ask, but it never lasts long. I'm a loving pest.

Thanks too for the reminder about realistic expectations. It's the same advice I would give some other progressive MSer or their caregiver, but at times like these, you need to hear it yourself.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Sharon » Tue Oct 20, 2009 3:00 pm

Joyce wrote
I'm a loving pest.

GOOD FOR YOU!!
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Postby Loobie » Wed Oct 21, 2009 5:38 am

mormiles wrote:Thanks too for the reminder about realistic expectations. It's the same advice I would give some other progressive MSer or their caregiver, but at times like these, you need to hear it yourself.


Joyce,

I don't know if you read my blog or not, but the expectations portion of it has really taken me this long to really come to grips with. Now I must admit to being a bit more impatient than the average bear, but I've kind of been chronicling my journey and coming to what I call "calm acceptance" of all of this. What I've come to realize is that there is a distinct possibility that NONE of what I got will get better. Dr. Dake and my neuro. both could not show my a specific, dead nuts, there it is, lesion on my last MRI. There were just abnormalities in the gray or white matter (I don't remember which) and some 'uneven lines' in the one area right in the center where you have like a clearly defined arc. Boy that sounded scientific. But at any rate, what has helped me mentally is to realize that maybe we just stopped progression. That's awesome. Now the only way I can get better is to work it out. I don't know if it's what it's going to take, but that's where I'm at now and it has really helped my angst. It is going to be a mighty struggle. I have 0 energy at the end of the day, yet I still need to exercise.

We just had surgery. It's simply human nature to put a stimulus /response' dynamic on it. We had A done, now it's time to expect B. But this one maybe just stopped the bleeding and didn't 'fix' anything broken like a bone or something. I feel like I'm failing in explaining this, but I know right where Steve is at mentally.

Take yesterday for instance. When I got home from shoulder PT, I had to blow leaves. Well I was just going to do a little bit (this isn't like rototillling!) and it turned into more. By the end of it I could literally barely keep myself upright my left leg was so weak. So that kind of stuff is still there in all its' glory. But then not 45 minutes later, I was recovered enough to do what I had to to finish up the night including a number of trips up the stairs. So while the MS weakness and all of that is still there, the recovery time is not only quicker, it sticks. By that I mean once I was recovered, I was recovered. It used to be I would recover enough to function, but I dare not do too many trips up the stairs of walk much at all since the recovery was very 'fragile' and I could get flared up again way easy. I think that is the kind of stuff Marie talks about. It's so subtle, but there's a difference. It's not worse and you don't get all down in the dumps.

Plus "F" Coumadin. I supported my leaf blower with my right thigh to take some weight off of it. Well you should see the damn bruise on my freakin' leg this morning. It's monumental! I hate that shit, but it was just a reminder that the stuff is nothing to brush off. I mean it wasn't banging against my leg or anything. I know that we all had what we thought were realistic expectations about this just stopping things from getting worse and all of that. But I also know in our hearts we yearn for improvement. My gut feel is that it's on us. That will also be a long road for all of us since just getting to the point where we can exercise to any meaningful degree (gaining ground on conditioning) could take forever. I mean I can't hardly ride a damn stationary bike for 15 minutes without needing to sit on it for about 15 minutes more to make sure I just don't fall over when I get off.

It's a weird deal. We just really have to be patient. Prod Steve to do what he can. I don't know you guys so I don't know if you need to do that. But all I know is now that I've started exercising again, albeit very lightly, I feel better.
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Postby chrishasms » Wed Oct 21, 2009 9:08 am

123
Last edited by chrishasms on Sat Dec 05, 2009 1:21 pm, edited 1 time in total.
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Postby mormiles » Wed Oct 21, 2009 9:47 am

Thanks Lew, I do read your blog, but I hadn't read your last post until now. Your blog provides a window into Steve's mysterious inner world that I would never find if I didn't read it. You give a voice to this very quiet man who never complains and who tunes out from parts of himself when they give him trouble. "Thanks" doesn't even approach what I want to say.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby mrhodes40 » Wed Oct 21, 2009 10:08 am

But then not 45 minutes later, I was recovered enough to do what I had to to finish up the night including a number of trips up the stairs. So while the MS weakness and all of that is still there, the recovery time is not only quicker, it sticks. By that I mean once I was recovered, I was recovered


This is exactly like me.... I can do stuff all day long if I rest in between, used to be cumulative fatigue wiped out any possibilities after time. But there you go: this is not a "miraculous" change in function, and the experience is one of subtle improvement.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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