Skeptical but not a skeptic

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

Skeptical but not a skeptic

Postby sojourner » Tue Dec 13, 2005 5:17 pm

Hello all,
This is my first post here, although I admit to lurking about for some time. The forum is outstanding and I have gained so much valuable information from everyone. Thank You!!

My husband was diagnosed in May, 2004--Since that time he has been on Avonex (Tysabri, briefly) and doing quite well. Well enough to finally have returned to his job as an airline pilot. He is also on a myriad of supplements-fish oil, NAC, ALA,D,E. I have been following the Antibiotics thread for some time and have also visited the CPn Help website.

Since I am my husband's MS consultant, I thought I should take my investigation of antibiotics to the next level, and actually ask a few questions.

What are the dangers of longterm antibiotic use?
If there is no herxheimer reaction in a certain amount of time on the abx, should one discontinue use?
May conventional therapy (avonex) be continued safely?
If there are no major risks with this regime, why isn't everybody trying it?

Thanks, Lexy
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Long-term abx

Postby Katman » Tue Dec 13, 2005 6:40 pm

Hi Lexy

My name is Rica- Katman. I am PPMS and have takem 4 abx for the past 15 months. I also take Avonex, now only every 8 or 9 days. My husband is a highly-trained pediatrician and has watched this every day. He said at the beginning that none of these are particularly dangerous so maybe I should try it. That advice was for me, not for others. He doesn't do big people. I have had no bad reactions from these drugs but I take all the recommended supplements dauly,
We take the specified drugs to prevent resistance. One precaution to consider before beginning is that once begun, the chosen regimen should be continued for at least six months to a year to avoid just that and to give improvement a chance. This is not a short course.

Of course, your other question is one all of us ponder who are getting better on this. I don't believe any of us can give one answer. We can only speculate. I know that some are comfortable with this, some actually LIKE being there, and some are fearful. All of us have done this because it is the ONLY offer on the table that offers a very possible cure, with some to much improvement in physical ability, something unprecedented till now. Most of Sarah's lesions actually vanished on her last MRI.

Rica
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 SarahLonglands » Wed Dec 14, 2005 4:40 am

Hello Lexy,

Rica said:
Most of Sarah's lesions actually vanished on her last MRI.

I wish that were true! Well, shrunk not vanished, although a few around the edge did vanish and I have absolutely no new activity since starting somewhat over two years ago.

Let's go through your questions one by one:

What are the dangers of longterm antibiotic use?
The antibiotics recommended by my husband, David Wheldon and the main ones by Charles Stratton of Vanderbilt are as safe as any and ideal for long term use. INH, which I have never taken, needs closer monitoring and rifampicin can't be used for intermittent therapy.

If there is no herxheimer reaction in a certain amount of time on the abx, should one discontinue use?
No "herxheimer reaction" is nothing to worry about, either if you mean a true herxheimer reaction or the violent aches and pains which some people report.. When I first started I felt as though I was coming down with the 'flu for a week or so, then after the fifth pulse* of flagyl I had some violent pains in my right arm for a couple of weeks, but that was due to the fact that my arm had been virtually paralysed before starting treatment. Someone not so afflicted could well not feel anything much.

*I used to think it was the third pulse, but talking to someone who started in early August, at virtually the same time, two years on, I realised that it must have been at least the fifth time because it wasn't until February of the following year.

May conventional therapy (avonex) be continued safely?
As you have already discovered from Rica, avonex may be used at the same time.

If there are no major risks with this regime, why isn't everybody trying it?
I wonder this myself. Most neurologists, including my own, completely scoff at the idea. Certainly many people don't like the idea of using long-term antibiotics, but if they had TB they would have no choice. If you take adequate probiotics along with the treatment, you get no gut problems. I didn't. But now I have got my life back, which personally I find preferable to a life of severe disability.

Have you read this:

http://www.davidwheldon.co.uk/ms-treatment.html

It is being constantly updated and is a mine of useful information. If you would like to write to David, you would be most welcome. His hospital address is to the bottom of the first page.

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 Katman » Wed Dec 14, 2005 6:09 am

Thank you, Sarah. I can be over-enthusiastic at times, and sometimes need to be reined in. You are correct in saying shrunk, not vanished. I believe the fact remains, though, that this does not happen to the MRIs of progressive MS patients.

The person to whom I gave my cane does not have a computer, is a patient of Dr K______ , a neurologist who knows Charles Stratton and is coming today to examine the protocols of these sites. She saw him, told him she wants to do this, and he said choose one of these. I will give an update tonight, I hope. Any advice and opinions are welcome. She will be here in a few hours.

Rica
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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Advice for Rica's friend

Postby SarahLonglands » Wed Dec 14, 2005 8:03 am

Hi Rica,

You are perfectly correct when you say that the brains of people with progressive MS do not show even shrinkage of lesions, let alone the disappearance of them, so don't rein yourself in too hard!

As for your friend, I would suggest the regime common to both David and to Stratton: doxycycline and azithromycin, adding either flagyl or tinidazole after a period of time. The first two are the most easy to tolerate for most people and are obtainable either side of the Atlantic. Remember the importance of the adjuncts as well, perhaps the most important of which is now showing itself to be NAC. If you take this or a few weeks then start the abx it can even give you a head start. Then I might suggest actually purchasing a computer and going on line! The amount of support you can get both from this site and CPn Help is enormous.

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 sojourner » Wed Dec 14, 2005 8:15 am

Thanks to you both.

I have visited all of the recommended sites. I believe I understand David's protocol and rationale for both the regimen and CPn as an underlying cause of MS.

Jim is away at training in Denver, so I want to gather as much info as possible and allow him to review it. Sarah, I might take you up on the offer to contact David directly, but I think I would save that for Jim to do himself.

Here is my biggest frustration----We have taken a "do it all" approach and if we contiune this, I feel as if we might never know what is helping. Jim believes he has felt real benefits from his supplements (especially the fish oil and NAC) He is less sure about the Avonex, but one never really knows with this monster. He almost felt like his old self on Tysabri, as well. If we add abx and he has no distinct Herxheimer, I'm afraid we will still be swimming in a sea of ambiguity with regard to treatment success.

One other thing to run by you guys. Jim's first real exacerbation (he had other "weird stuff" happening for at least 10 years prior) occured after a sinus infection that was difficult to treat. A course of abx (I think zithromax) and oral steroids preceded his attack. A referred trip to an ENT with the ENT then saying that Jim had neurological symptoms was how he received his first MRI.

I don't want to sound crazy, but could this "attack" have actually been a herx??? Can a herx reaction ever illicit new MS symptoms or just reactivate old ones? His exacerbation lasted about 3-4 weeks (can't rememeber exactly). Can a herx last that long?

Sorry for the long post and I don't mean to fixate on the herx---but it is important evidence in my silly head that the abx are working. And darn it, if Jim does the abx--he better have the herx :) I guess the only way to know is to try and that decision is for Jim to make.

Thank you again, Lexy
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Postby Katman » Wed Dec 14, 2005 8:54 am

Me again. Being PPMS for 10 years, I have never had an exacerbation. I was so far gone last year that I barely remember anything. I was only on Doxy and Rifampin, beginning all the supplements in July, I think it was. I believe that, with the exception of NAC, they are primarily nutritional, to help a very ravaged body fight back. I can tell you that I feel better than I have for 10 years after inexorable downhill progression to the point that I could walk only 5 or 10 feet without more and more support, and not at all alone. I don't know if I had "Herx's" or not. For me, abx has been the exact reverse of my dowward progression.

Rica
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 sojourner » Wed Dec 14, 2005 10:53 am

I am very glad to hear you are doing so well, Rica! This disease stinks! While I am a bystander to all of this, I have a great understanding of the emotional as well as physical toll MS takes.

I have been reading so much info that my head is swimming.

I don't know if it is my time spent alone lately (quit my job as a high school history teacher, kids are at school and husband is away) but I have been having CPn epiphanies. Things have popped into my head and I am going to go where my thoughts take me!

1. Something told me to take a close look at abx therapy.

2. I have made some kind of connection between my husbands first real exacerbation and his sinus infection ( and possibly his course of abx).

3. My daughter (8) had an episode of Kawasaki Syndrome this summer. It presents as an infectious disease (even treated by infectious disease experts) yet they have not been able to determine any microbe associated with it. So it seems just because they cannot find one doesn't mean there isn't one there. Why not MS, too?

By the way--Kawasaki is the leading cause of cardiac disease in children--could CPn play a clandestine role, here?

Gladly, our daughter (Gretchen) is doing great. Three echos so far and her little heart is perfect. Of course, she takes her fish oil daily!

Regards, Lexy
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Postby SarahLonglands » Wed Dec 14, 2005 12:22 pm

Hello again Lexy!

Sinus problems come up time and time again with various people. Especially persistent, difficult to treat ones. I have come across it so often when talking about different people's experience that surely it is more than mere coincidence. Well, unless you are a neurologist, that is!

Your comments about Kawasaki syndrome are very interesting as well. I will discuss this with David later. I am glad that Gretchen is doing alright after it.

Going back to your previous post about the "Do it all" approach, if your husband gets completely better, it certainly won't be the avonex, for starters. The supplements, especially the fish oil and NAC will help enormously and are included in David's protocol anyway. Don't worry about the sea of ambiguity. If your husband gets completely better, it is only going to be due to the antibiotics. After all, there is "no known cure" for MS, according to the neurologists.

Sarah :wink:
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 Katman » Wed Dec 14, 2005 1:53 pm

Hi Sarah
Brenda is here. Dr. K_______ sent an offer of a research study or a regimen consisting of Rifampin, 300 mg. 2xd and Azithromycin, 250 mg. MWF. He told her that there is a list of adjuncts she must take. I wrote the list for her. I had a spare bottle of NAC to get her started. She told him that her cane was given to her by the person he knew about because "she didn't need it any more" He apparently had CPn Help on his computer while she was there and let her know that he wanted her to choose the abx.
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 sojourner » Wed Dec 14, 2005 1:56 pm

You are right- if he gets completely better than I think we will be able to discern that it was the abx.

And yes, sinus troubles always seem to make Jim's MSey stuff worse. It's strange but we always laugh that if we could fix his sinuses we could fix his MS. Maybe that is the Wheldon Protocol's job :)

Lexy
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Postby SarahLonglands » Wed Dec 14, 2005 3:59 pm

Hi Rica, well there's nothing like the neuro asking the patient for advice is there? Perhaps they should do it more often!

And Lexy, I must admit that I have never had sinus problems, though I seem to be in the minority here. I did, however, have adult onset asthma, which has now completely gone, so I think there is maybe more in Jim's comment than he realised. Gosh, what a strange and interesting day this has been, both of you. It is now nearly time for bed here and I haven't been able to pick up a paintbrush at all, but for once I don't mind!

Sarah :)

PS: Lexy, Charles Stratton started it all. We just brought it more out into the open. 8)
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 sojourner » Fri Dec 16, 2005 7:22 am

Hi Sarah,
My last several days have been "strange" so I understand what you mean---but I don't mind either!

Another thing about Jim--and I'm wondering if anyone else experiences this- Prior to MS he could go all day without a drop of food. He really was an eat to live person and had no ill effects from this--ever--- Until the MS exacerbation. Now he must eat breakfast, lunch precisely at 11:10 a.m. and dinner, or he goes way downhill. Not fatigue so much, but just a feeling of unwellness.

After reading Dr. Strattons supplementation advise, the part about cPN stealing glucose from the cells struck me. Could this be why he suddenly needs to eat more regularly to feel ok?

I have ordered the additional supplements and am planning on adding these new ones on Jim's return. He is such a good sport and always listens to his MS consultant--ME!

Lexy
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Postby SarahLonglands » Fri Dec 16, 2005 8:00 am

Funny you should mention that, but ever since I was about nineteen or twenty I suffered from low blood sugar. If I was out walking and felt hungry I had to eat, straight away. David experienced this in me on our first holiday together, walking in the Peak District and he had never seen anything like it. I suddenly became so week and floppy that I couldn't do anything.

The week before my last big exacerbation, just before I became inexorably progressive, I just ate and ate but still felt hungry.

Jim is lucky indeed to have you as his MS consultant!

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 SarahLonglands » Fri Dec 16, 2005 9:35 am

But what I omitted to say in the last post was that I didn't suffer from this before and I don't now. I used to be able to go all day without eating and I can again now. In thatv rather long interim I didn't get fat - well, I never have been, so I guess the CPn was devouring all the glucose.

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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