LJM antibiotic log/start

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

Postby ljm » Fri Jun 10, 2005 10:39 pm

I now have another symptom. A sort of lump in my throat.... a feeling of warmth and gratitude...really Sarah, you are beyond kind to someone you don't even know. I'll try the flagyl and see what happens. Good thing I know ahead of time I might get gloomy.
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Sept update, 5 months

Postby ljm » Fri Sep 16, 2005 12:00 pm

Not sure there is anything to report, but here it is.

I've continued to take minocycline and azithromycine. I have delayed taking flagyl. So the following is assessment with flagyl's possible benefits/or side effects.

Some symptoms are unchanged:
- tingling/slight numbness in hands/fingertips

Some symptoms have improved, actually just in the last 3-4 weeks
- only very occasional and reduced double vision when running
- hermettes sign appears to have disappeared

Some symptoms appear to be changing/possibly worsening
- leg sensations of tingling/bubbling, pinpricks

Based on above, I'm somewhat ambivalent about whether this is working for me. I suspect all the vitamin/supplement/workout stuff is doning as much. But, I'm going to continue ABX to 8month and then probably change to statins...unless results from my second MRI indicate anything particularly positive or negative...

LJM
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Re: Sept update, 5 months

Postby CureOrBust » Sat Sep 17, 2005 2:41 am

ljm wrote:... I'm going to continue ABX to 8month and then probably change to statins...unless results from my second MRI indicate anything particularly positive or negative...


ljm,

As far as I know, the only reason not to take statins and abx at the same time is that they both hit your liver (anyone else know a reason not to?).

I am currently on Statins, LDN and have just started ABX's. I have blood tests whenever I see my GP to make sure I dont cause any damage. I will have my first test with the 3 treatments running at the same time in about 10days. Hopefully I wont have anythig to worry about, as I think the statins (80mg simvastatin) have been helping since i came off rebif. Its too early for an opinion on ABX.

I dont really care about knowing which in particular is doing the most or all the good, i just think if there is no other permanent damage, then any improvement from ms is welcome.

In other words, research it, and talk to your doctor about starting statins, dont wait.
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Postby SarahLonglands » Sat Sep 17, 2005 4:44 am

Lizz,

Some symptoms are unchanged:
- tingling/slight numbness in hands/fingertips

and

Some symptoms appear to be changing/possibly worsening
- leg sensations of tingling/bubbling, pinpricks

These might appear to get worse for a while, but it doesn't signify worse damage. It is more like the effect when your legs have gone to sleep due to sitting awkwardly, then they come back to life. Someone will no doubt have a go at me for that, but its true. I know because I have experienced it myself.

Some symptoms have improved, actually just in the last 3-4 weeks
- only very occasional and reduced double vision when running
- hermettes sign appears to have disappeared

These are the best signs of improvement. Read Gibbledegook's postings about l'hermittes, or PM her about it. I was just developing l'hermittes sign, signifying spinal cord lesions, when I started abx, but because it was so new, it was one of the first things to disappear. Vitamins and supplements would not be of much help here. You would be wise not to stop the abx at only eight months, because you risk a return of the infection, however you can take statins at the same time, as long as you take care of your liver. Several people are, CureorBust among them!

You might not find much change on your next MRI. Many of my outer lesions have gone, next in have shrunk, but I am probably always going to have the very oldest ones in the periventricular region. This is only a very small area so I can work around that. If you have no new lesions, that shows much more.

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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Postby ljm » Sat Sep 17, 2005 10:50 am

Sarah, thanks for your message, regarding the disappearance of hermittes sign, I've followed gobbledegook postings with interest, notyetdone reported dissappearance it as well as one of the first impacts of ABX as well. I'm assuming its positive but who knows, I thought the lack of new lesions was good news, now I wonder if it is in fact ominous.

Cureorbust, yes, it was the extra load on my liver that suggested statins and abx together were problematic, otherwise I would have hit all three (abx, statin, ldn) as you are doing. Maybe I'll raise it again with my GP, he ws unenthusiastic about doing anything more until the ABX theory had been tested.
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Postby SarahLonglands » Sat Sep 17, 2005 11:05 am

Ominous? No way! You are worrying way too much, which I can understand in a way, but never think that lack of new lesions is ominous.

You didn't take the meaning of my last sentence wrongly, I hope:
"If you have no new lesions, that shows much more."
I didn't mean that you may have more to come, but that it is a very good sign!

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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Postby CureOrBust » Sun Sep 18, 2005 5:47 am

ljm wrote:he is unenthusiastic about doing anything more until the ABX theory had been tested.


your not a specimen for him to test theories on (even if they are one of yours). Get better first.

Ask how enthusiastic he would be about being in a wheelchair in the future.

I am VERY lucky in that my GP understands the seriousness of MS, and takes the approach "do no harm".

Dont get me wrong, your doctor deserves respect and politeness, but your health may be at risk. My feeling is that if there is any possibility it will help, and the risk of damage is low (or can be checked for with a blood test), then try it and monitor it.
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Encouragement to stay the course

Postby Jimk » Sun Sep 18, 2005 7:08 am

LJM-
You are doing the appropriate thing, going slowly with the replicating abx before you get to the Flagyl. Your "side effects" are consistent, as all the MS'ers out there on abx are telling you. You may not feel better (and likely will first feel worse) until you start adding the Flagyl. The draw on your energy of the cryptic form of Cpn is remarkable. I'm didn't feel my first burst of energy until my first dose of Flagyl. You can read my story on www.CPn Help.org. I'm don't have MS, so can't comment on the neuro symptoms. But your "stoned" feeling may be due to secondary porphyria, which causes psychoneuro type symptoms like anxiety and hallucination (when severe).
The Stratton protocol (see www.CPn Help.org) describes this in some detail and supplements meant to counter it. You might have your doctor test you for this, or just see if the right supplementation-- especially B12 shots-- helps.

Also-- have your doc review the www.CPn Help.org site, especially the link made for physicians. Perhaps it will convince him that there is a lot of good, solid science out there supporting the model.

Jim
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Postby ljm » Mon Sep 26, 2005 10:47 pm

I have results from my second MRI. There are no new lesions, no enhanced lesions. My neurological testing (as cursory as it always is) was normal. This is good news. The only downside is that I appear to have a had a relapse at the end of August, something very mild, but progression nonetheless (mild enough that my neuro is unsure to classify it as a relapse). One thing that may be of interest. When I saw the neuro in May I told her I was taking ABX and she just sort of shrugged a bit. At this exam, she didn't exactly recommend anything, but she said that "if she were in my situation" she would take vitamin D, omega 3, and minocycline. When I expressed surprise she said she thought there would be further research results coming out soon.
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Postby Daunted » Tue Sep 27, 2005 6:52 am

The MRI results are great news! Congratulations. And that's without the Flagyl, right?
On Vanderbilt Antibiotic Protocol since January
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My Adventures in MS

Postby Katman » Tue Sep 27, 2005 7:43 am

Another pulse of Flagyl is upon me. I welcome it with open arms and flattened psyche. Last week in the middle of downtime from Flagyl I went to a dinner sponsored by an MS product maker with a new MS acquaintance who could bring a guest. Aggressive person that I am, only a minute or so after choosing our table (right in front of the speaker's podium) I turned to my friend and said "Is is time?" She laughted and said "Sure". I immediately told of This is MS, CPn Help.org David and Sarah Wheldon and Dr. Stratton. Our reception to this (electrifying ) news was very interesting. There were 6 people at that table. Two were a married couple in their 50's, the wife the one with MS, and a mother and daughter about 70 and 50. The responses were strong. The wife said "Oh, I am not interested in alternative or unproven treatments". The daughter said "Please write all that down and tell me more". I still cannot understand people who don't want to improve and LIKE being crippled. It is very different if one has fought the good fight but this woman really LIKED where she was. Maybe I am missing something- anyone have input into this phenomenon? The daughter is probably already on abx!
After a really delicious and nutritious dinner, at question time, I stood and asked the neurologist if he knew of abx in MS treatment. When he said not really I told him some of what I knew (or thought I did!) and gave him a list of sites and names. He promised to look at them. I have an appointment with him soon and will report any news. This is a rotten disease- SUCH A WASTE OF TIME1

I do have a question- I am on Rifampin and Doxycycline- should I add Zithromax? If I can improve faster by doing so I want to do that. I tolerate all these very well- in fact my body loves this. It has been one year this week and without this at the rate I was sinking I would be either bedridden or dead now. I have maintained that from the start I had nothing to lose and went for eight months on grim faith alone. Each day I reap the benefits. The main thing I have trouble with is holding down my cheese consmption. My favorite food in the world is whole wheat pasta and cheddar cheese and home made feta (goat) on my many salads. I have given up my homemade (goat) ice milk shakes. Also giving up my 3x a month Mexican food dinner is a failure. Fortunately, I love vegetables in any form but I love fruit equally! A note: my husband got me a pedometerr- I set it and wore it for four days - it shows almost 30,000 steps! That is at least 60,000 feet-( I set it for my 24" steps) -I am 5' 2" Anyway, I average at least 2 1/2 miles a day, not counting the lifing, reaching, and bending. This is much more than even a few months ago.

There are quite a few of us out there now and we are at different stages of treatment but it sure looks good to me. I hope Drs. Stratton and Sriram are looking in occasionally. David Wheldon has an hourly reminder of his success. I saw my opthalmologist yesterday. The wife of one of the drs. she works with has MS. I gave her (my ophthalmologist) a list also. One by one, we will slay the dragons. (Dragonslayer was the name of one of our bucks - a gentle giant)

But LJM- you have not done Flagyl yet or did I miss something?
Your MRI showed no new lesions. I think you have progressed in the right direction. Is this not an indicator?

Katman
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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Postby ljm » Tue Sep 27, 2005 10:05 am

Katman, yes, no new lesions, no enhanced lesions, no change in volume of lesions is all good news. Further, I had a thorough eye exam, no sign of optic neuritis, everything okay there (no explanation of double vision thing but i'm sort of counting on that disappearing).

Daunted, I have had two courses of Flagyl in past two weeks (2 days each). That is too recent to have affected the MRI

Anyhow. The transition of my neuro from dismissing the ABX approach to unofficially recommending regular minocycline (in the course of only three months) is encouraging. My guess is she's heard early reports from the second trial out of Alberta/Canada.
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Postby bromley » Tue Sep 27, 2005 10:56 am

ljm,

Thanks for the information on minocycline. I think the trial was in Calgary and they reported some preliminary results last May (18 months ago) which looked very promising. In the recently announced (end of August) Promise 2010 grants by the NMSS, one of the researchers is looking at minocycline - in terms of a neuro-protective agent. There is also a trial of copaxone and minocycline.

CPn may or may not turn out to be the culprit (or perhaps only in some with MS) but the doxycycline element of the regime should (like minocycline) have a positive effect on the immune system and protecting nerves.

An article in early September from the UK MS Society on minocycline is attached

http://www.mssociety.org.uk/news_events ... tions.html


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Postby ljm » Tue Sep 27, 2005 8:20 pm

Bromley, thanks for the link on combination therapies (interferons and minocycline). In fact, to give the full quote from the neuro when I asked her what she would do in my situation it was "I'd take VitD, omega 3 and minocyline and wait...if I had second clear and unmistakeable relapse I'd probably look to copaxone and minocycline" That also came as a surprise since three months ago when I asked about copaxone she said it didn't have very compelling results and that several neuros at the clinic would not prescribe it. Again, I'm assuming she may be getting some early reports from the Calgary trials that are testing that combination.
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Postby CureOrBust » Fri Sep 30, 2005 1:46 am

ljm wrote:... yes, it was the extra load on my liver that suggested statins and abx together were problematic, otherwise I would have hit all three (abx, statin, ldn) ...


I am taking 80mg simvastatin every day, as well as on doxy and roxi (abx regimine). I just got my results from my last blood test, and it showed my liver was fine. The doctor actually used the word "great". So it would appear some lucky people have a liver that is made of steel. Whoo Hoo!

By the way, as far as I know, LDN does not do anything negative to your liver.
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