Daunted's antibiotic log

Tell us what you are using to treat your MS-- and how you are doing.

Postby bromley » Thu Aug 04, 2005 2:41 pm

Sarah,

Bromley, I thought you didn't drink: have you fallen by the wayside or are you encouraging younger boarders into bad habits which you wouldn't do yourself?


I don't drink alcohol, have never smoked, and never taken drugs. I ran twice a week for 15 years (up to my dx) and have only made love to one woman. Despite this puritanical approach to life I still managed to get this grim disease. I would, therefore, have a sip of champagne if my MRIs showed no lesions.

I only recently turned 40 - your e-mail imply that I'm an old codger corrupting the young. I might seek legal advice from OddDuck on this.

Shouldn't you be getting back to you art work? The print you sent me has been framed and takes pride of place in the upstairs hallway.


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Re: Congratulations!!

Postby Daunted » Thu Aug 04, 2005 2:43 pm

No lesions is good news!

It gets more ambigious, though. I have a hyperintense area across C4-C5-C6 that the radiologist notes is "artifactual". Or an old lesion..? We will have to see, I guess.

I will remain on the antibiotics for the moment and hopefully my various doctors can sort this out. I am waiting for the verdict of my neurologist, first.

I try to be as scientific as possible and if an alternative diagnosis was found to explain my symptoms, that'd be great...although spondylosis can be progressive and no fun at all, either, it's certainly more benign in most cases than MS. And surgery would be an option.

But until my neuro calls I won't have any idea. It might be that this spondylosis couldn't possibly account for my symptoms.

But I am tremendously relieved at the lack of lesions in a 3.0...that was the Super Bowl of MRIs, so to speak.
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Postby SarahLonglands » Fri Aug 05, 2005 4:04 am

Oh, Bromley, I was only joking! Everyone knows you aren't an old codger (your words, not mine.) I think OddDuck would be the first to laugh.

Daunted is about to start on the next stage of his academic life, so whatever else happens, as he said, "No lesions is good news!"

I know I won't be able to say the same thing later this month, but at least I should show quite a few less lesions than a year ago.

Back to my painting now! :)
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 bromley » Fri Aug 05, 2005 5:30 am

Sarah,

Forward me a signed painting and we'll call it quits.

For some reason I always assumed Daunted was a woman (sorry Daunted no offense intended).

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Postby Daunted » Fri Aug 05, 2005 7:16 pm

Oh and let's just say some (or all) of my symptoms ARE due to cervical spondylosis instead of demyelination- which would be great news.

It might be that my improvements are not some weird placebo effect...

The plot thickens!

http://www.medicalnewstoday.com/medical ... wsid=27375

Promise of Tetracycline Antibiotic for Osteoarthritis
14 Jul 2005

Study Shows Effectiveness of Doxycycline in Slowing Disease Progression.

A tetracycline antibiotic, doxycycline, has been successfully used to treat
a wide-range of bacterial infections. In addition to its effects as an antibiotic, doxycycline has other actions as a drug and, in laboratory studies with animals and with human tissue, can inhibit the degradation of cartilage in a way that could be useful for the treatment of osteoarthritis (OA). OA is a common form of arthritis associated with pain and disability related to the breakdown of cartilage, the tissue in the joint that absorbs shock and promotes smooth movement.

On the strength of preclinical evidence, a team of rheumatologists affiliated with six clinical research centers across the United States conducted the first long-term clinical trial to determine the benefits of doxycycline in the treatment of OA-particularly, OA of the knee. Their findings, featured in the July 2005 issue of Arthritis & Rheumatism ( http://www.interscience.wiley.com/journal/arthritis), suggest that doxycycline may slow the progression of joint damage and point to the need for further research into the drug's effect on the signs and symptoms of this disease.

For the trial, the team recruited 431 overweight women between the ages of 45 and 64 with moderately advanced OA in one knee. The subjects were randomly assigned to receive either 100 milligrams of doxycycline or a placebo twice a day for 30 months. At baseline, the 2 treatment groups were roughly equal with respect to all demographic variables, body mass index, and types of drugs taken for pain, as well as for the x-ray severity of OA in the affected knee and the level of knee pain and functional impairment. OA progression was assessed by measuring joint space narrowing in the medial tibiofemoral compartment through X-rays obtained at baseline, 16 months and 30 months. Severity of joint pain was assessed every 6 months after a washout period of all nonsteroidal anti-inflammatory drugs (NSAIDs) and analgesics.

71 percent of the subjects completed the treatment protocol. Radiographs were obtained from 85 percent of all subjects at 30 months. After 16 months of treatment, the mean loss of joint space width in the diseased knee in the doxycycline group was 40 percent less than in the placebo group. After 30 months, it was 33 percent less. Yet, despite significantly slowing disease progression, d oxycycline did not reduce the severity of joint pain. However, mean pain scores at baseline were low in both treatment groups, leaving only limited opportunity to demonstrate improvement in joint pain. On the other hand, the drug significantly reduced the frequency with which subjects reported increases in knee pain 20 percent or greater than the level of pain they had at their previous semi-annual visit.

Notably, doxycycline seemed to have no effect on joint space narrowing or pain in the relatively disease-free knee. In both knees in both treatment groups, the rate of joint space narrowing was more than twice as rapid in subjects who reported frequent increases in pain than in those with a stable pain score. “Joint pain may serve as an indicator of synovitis that leads to cartilage destruction,” observes the study's leading author, Kenneth D. Brandt, M.D.

Throughout the trial, fewer than 5 percent of all subjects reported side effects. In general, doxycycline seemed to be well tolerated. Subjects in the active treatment group experienced the unexpected side benefits of fewer urinary tract and upper respiratory tract infections than their placebo counterparts.

In conclusion, in this study, doxcycyline showed benefits in slowing the rate of joint space narrowing in knees with established OA. Whether this drug has any value in the early treatment and symptomatic management of OA, however, will require further investigation.

Article : “Effects of Doxycyline on Progression of Osteoarthritis: Results of a Randomized, Placebo-Controlled, Double-Blind Trial,” Kenneth D. Brandt, Steven A. Mazzuca, Barry P. Katz, Kathleen A. Lane, Kenneth A. Buckwalter, David E. Yocum, Frederick Wolfe, Thomas J. Schnitzer, Larry W. Moreland, Susan Manzi, John D. Bradley, Leena Sharma, Chester V. Oddis, Steven T. Hugenberg, and Louis W. Heck, Arthritis & Rheumatism , July 2005; 52:7; pp. 2015-2025. Article is available via Wiley InterScience at interscience.wiley.com/journal/arthritis.
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Postby natgas » Tue Aug 09, 2005 9:24 pm

Just found out about this message board from Life on Ice on the MS World board. There is allot of info to be adsorbed here.

I've been working w/ a microbiologist in Australia on oilfield related research and had him start doing a little research on microbes and MS and than Life on Ice posted a thread on MS World with her regiment.

I'd had a Doctor appt. today w/ my Vandy doc's (Moses and Sriram) and was quizzing them about this protocol and found out they had been working on similar type of treatments. I'm in a drug trial @ Vandy for Rituxan but w/ no success so far except that the MS has gotten much worst, as I was walking w/ a cane when I started and now I cruising in a wheel chair. I’ll be starting on the protocol as soon as I complete the requirements of the drug trial.

I’m been DX w/ PPMS are are there others on this protocol w/ PPMS.

Good luck to all on the treatment and to your continuing success.

And thanks again Ice for your posts.

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Postby LifeontheIce » Wed Aug 10, 2005 4:11 am

Welcome, Roy, to this side! I am so happy you posted.
As you already noticed people here actually want to do something about their condition, not only cry together.
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My Adventures in MS and Welcome to Natgas

Postby Katman » Wed Aug 10, 2005 6:52 am

Delighted to have you aboard this optimistic place where people don't only say things like "My wheelchair gave me freedom". LifeontheIce is an eminent speaker of this forum and just said one of those poetic statements-
(can't do the manipulatiion required) "People want to do something about their condition, not just cry together". Love that!

Yes, I was diagnosed PP one year ago and began on David Wheldon's regimen late Sept 2004. Sarah, the ringleader of this gang, is about 13 months ahead of me so she has had the courage to be the trailblazer. We have dairy goats and regular feeding alone takes us both two hours twice a day. Early May of this year I was in VERY bad shape and knew then that I would soon be in a wheelchair and could see the end of a hobby of 28 years. Two weeks later I realized I had spent the entire day clipping bodies and "doing feet" and I was tired but not exhausted. The antibiotics and all the supplements are a commitment- let there be no question about it- but at least for some of us it is well worth it (understatement). It took me ten years to get to that miserable level so I figured I had nothing whatsoever to lose.

Today in the barn I told my husband that this was the best Wednesday morning I have had for a year. That is significant because I have my Avonex on Wednesday evening, I am on day four of my seventh Flagyl pulse, and my liver functions are WAY up. I go six days after liver functions to repeat last Thursday's which were taken twelve hours after my shot and I bet they are down even a little and I will not get Avonex but will stay on the drugs. We all have to make this decision alone ultimately but here you have knowledgeable, intelligent support. Best luck Please keep us posted.
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Re: My Adventures in MS and Welcome to Natgas

Postby Daunted » Mon Aug 15, 2005 1:18 pm

Well, two weeks after my MRI was performed, my doctor finally sent me a note. He apparently didn't read the MRI himself but says the spondylosis, in his opinion, isn't clinically meaningful. If he's right (and I will be getting a 2nd opinion to ensure he is) then the most likely diagnosis for me is Chronic Fatigue Syndrome/FMS, for which I'm being treated with the antibiotics in any case, so perhaps all is well.

I continue to take the regimen, getting ready to pulse Flagyl again in a few days. I have had absolutely NO bladder problems since taking a 15-day break from Flagyl, which I find very interesting.

I have found a lot of the recent discussions very interesting. I hate to sound like a broken record but if you read the patents a lot of the data people are looking for is in there. Also I authored a thread at Braintalk where I compiled some informatin, people may be interested in that, it's at http://brain.hastypastry.net/forums/sho ... hp?t=52240

(Note added August 26: The thread was closed down at the end because of grouchy, obnoxious posts by another member. I want to thank Aaron and the moderators here, because they do an excellent job, quite in contrast to what we see at Braintalk, where the moderators slam threads shut in a thoughtless manner.) But there's still good links in that thread.

Off to vacation, take care all.
Last edited by Daunted on Fri Aug 26, 2005 8:45 am, edited 1 time in total.
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Re: My Adventures in MS and Welcome to Natgas

Postby Daunted » Thu Aug 25, 2005 10:58 pm

While on vacation I had an appointment with as Ali G would say, My Main Man, Dr. Powell.

I learned a bit more but the most important nugget is this. When you kill Cpn with antibiotics it releases even more endotoxin (hence the charcoal).

Pangestyme can be taken but is expensive. So, there's an over-the-counter product that can be taken that may help.

That is Similase (Complete Digestive Enzymes) by Tyler. (you can google it to purchase it).

Take 5 capsules 15 minutes before meals. If you do so, it will zap the endotoxin.

More later.

D.
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Re: My Adventures in MS and Welcome to Natgas

Postby Daunted » Sun Oct 16, 2005 12:11 pm

Just a quick update on me. I have been very busy and really haven't been logging on too much to the various sites that I used to frequent.

I'm still on my antibiotic combo although I reduced the Zithro to 250mg MWF due to cost. Stratton and my doctor both said this dosage should work if taken for an extended period of time (a year).

Another quick point: It may be unrealistic to think that treatment can be terminated after a year. Sarah's a small person and was using Roxithromycin, this should be kept in mind. I'm not willing to go over 18 months with the treatment but I am keeping an open mind about going over the "one year" mark which is of course somewhat arbitrary.

My CPn IgG titers went from 1:64 to 1:128 (confirmed twice) while under treatment, again, not a diagnostic level, but why should titers be rising while on an anti-chlamydial regimen?

I think I"m on the right track and I'm doing quite well.

I took a full 5 weeks off from Flagyl and that helped a lot!

Take care all

D.
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Good to hear from you

Postby Jimk » Sun Oct 16, 2005 2:35 pm

I had wondered how you were getting on. You sound like you are doing well. I'm glad.
Since titers indicate immune response, you can actually have a rise in titers under treatment as bacterial dna is liberated and cytokine responses are triggered. It is a not uncommon response according to Chuck Stratton.
On Wheldon/Stratton protocal since December '04 for non-MS Cpn: CFS/FMS
Ohio, USA
www.CPn Help.org
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Re: Good to hear from you

Postby Daunted » Sun Oct 16, 2005 6:08 pm

Jimk wrote:I had wondered how you were getting on. You sound like you are doing well. I'm glad.
Since titers indicate immune response, you can actually have a rise in titers under treatment as bacterial dna is liberated and cytokine responses are triggered. It is a not uncommon response according to Chuck Stratton.


Hey thanks, actually, it doesn't come across very well, but I was trying to be a bit funny when I pointed out my titers went up. It is further evidence that the abx treatment is the right direction for me.
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Postby MacKintosh » Sun Oct 16, 2005 10:11 pm

Daunted - I know this is old news, but I just read through most of this thread for the first time tonight. Add me to the list of unexplained (until now) low body temperature for the last couple of years. It's caused a lot of medical professionals to re-take my temperature more than once. I'm usually 97.4 (sorry, Sarah, I can't convert Celsius either) to a high of 98.2. If I'm over 98.2, I know I have a fever. - - - Oddly enough, as I'm feeling totally un-fatigued now on the abx, I did some serious physical work for several hours today (moving furniture, mattresses, clearing out years of my parents' collection of stuff). It resulted in a fever-like manifestation: flushed skin, very warm to the touch, which has lasted several hours. I'm hoping I'm killing cpn, bringing my body heat up a lot. Maybe I'm deluding myself, though, wanting so very badly for the abx to be working (it's only been ten days). Well, if I'm deluding myself, at least I got one of ten rooms cleared out today. I'm going back to kill more cpn -um, I mean clear out another room - tomorrow! :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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Postby CureOrBust » Mon Oct 17, 2005 1:10 am

MacKintosh wrote:I'm usually 97.4 (sorry, Sarah, I can't convert Celsius either) to a high of 98.2. If I'm over 98.2, I know I have a fever.


97.4 = 36.3C
98.2 = 36.8C

I also am sitting in the low range. On my digital thermometer, I get readings between 36 (ie 96.8F this morning) and 36.8 (98.2F my highest Ive got).

I even stayed in this range (ie 36.3-36.7C)during my first flagyl pulse. The guide with the thermometer said the normal expected temp orally was 37C.

Tc = (5/9)*(Tf-32);
Tc = temperature in degrees Celsius,
Tf = temperature in degrees Fahrenheit
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