Are any neurologists taking notice?

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

Postby SarahLonglands » Wed Aug 03, 2005 5:15 am

Sarah Wheldon's story...........
.............is that actually she is Sarah Longlands :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 notasperfectasyou » Mon May 21, 2007 11:55 am

Is there any new information about this? napay
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Postby tory2457 » Mon May 21, 2007 8:37 pm

Hi Bromley and Melody,

I will try to answer some of your questions as best as i can: Both from what I learned while reading,,,and then by experience.

As for Neurologists beginning to treat with antibiotics? I don't think there is too much change yet, but the research is there, and for how long this research can be ignored? don't know.

I intend to take my MRI's with me to my neuro along with all the information I have regarding Lyme Disease. Most importantly, how to test for lyme disease...

and I will have a DVD in hand Titled:
Dr. Steven Phillips: "Chronic Lyme Disease: Connection to MS- Facts behind the controversy"

This lecture was recorded at the Lyme Symposium held at the University
of New Haven on May 12, 2006. The symposium was organized by
Dr. Eva Sapi and her Lyme Research Group at the University of New Haven.

If anyone is interested in also giving their neuros this research here's how to get this lecture.

77 minute DVD $15
Please send a check or money order payable to University of New Haven (with your address) to:

Eva Sapi Ph.D.
University of New Haven
Department of Biology and Environmental Sciences
Cellular and Molecular Biology Graduate Program
300 Boston Post Road, Dodds Hall 314
West Haven, Connecticut 06516
203-479-4552

for me is was well every penny, a bit over my head because it's for the medical community. And by the way, the $15.00 is for Lyme research at the University of New Haven.

they just held a new Symposium this past Saturday...I hope they will offer a DVD for this lecture also.

As for the concern over the "mis-use" of antibiotics?

So many other concerns IMO, I have Lyme Disease, and antibiotics is what is making me better! For years, there was nothing to treat MS,,,and then I was prescribed Copaxone.
It states on the prescription: This Is Not a Cure for MS.
What exactly does Copaxone do? and what is it doing to my liver?

After getting a lyme test, and no not an ELISA ( too insensitive) I have a clear path "why" I have multiple scarring; and the protocol of antibiotics are making me better. They treat Tuberculosis for long periods of time, along with kids with acne and tots with ear infections; so I'll take my chances.

Here's some reading on antibiotic resisitance in our food supply. IMO, it could very well be the true culprit.

"The larger issue of antibiotic resistance has not been addressed. The micro-organisms / bacteria our cattle, chickens, fish, etc. come in contact with daily while they are being fed antibiotics are the bigger issue. Many micro-organsims are becoming antibiotic resistant thanks to feeding on our food animals who are fed with antibiotics. Think of how many ticks, fleas, mites, mosquitoes etc. feed on the back of one cow daily. Each time these bugs feed they are getting a small dose of antibiotic that is not at levels enough to kill micro-organisms/bacteria in their guts. These micro-organisms, through rapid regeneration, evolve levels of resistance to the antibiotics. This evolution crosses over into levels of resistance to human grade and type of antibiotic.

"The real culprit in antibiotic resistance is the overuse of antibiotics in our global farming industry and until that is dealt with any attempt to keep humans sick for fear of creating super bugs is simply a tool used to again create fear in the public, and medical community, against using the necessary antibiotics over a long enough time to heal us. Treating victims would cost the global medical insurance industry billions of dollars...so keeping the fear alive is standard fare for the profit driven market.

On any given day we have thousands of people arriving at our airports from countries around the world where antibiotics are available without prescription at local vendors. They will undoubtedly carry antibiotic resistant bacteria to our shores as well."
www.canlyme.com/antibiotic_resistance_lyme.html

"One protocol for rheumatoid arthritis allows Minocycline to be used
for 48 weeks, yet antibiotic/minocycline use for far fewer weeks is
condemned with respect to the arthritis-similar condition of Lyme
disease."
http://xrl.us/wnzq canlyme.com


My prescription for Minocycline states:
used to treat rheumatoid arthritis

I wonder how the docs differentiate which patients they give Minocycline to and which ones they don't? hmm,

People are treating their arthritis with Minocycline and are seeing improvement.

There is so much misinformation still about the connection between MS and Lyme Disease, and Fibromyalgia, and Lupus, and CFS, and sooo many other diseases, I would recommend this: rather than getting an ELISA test, and then having a negative result (most of us do test negative)
just ask your neuro or ID doc to have a CD57 test done along with an Immune Complex Ciq. (LabCorp is a bit better than Quest for testing btw).
Both of these tests allow the docs to have a look at your immune system. Are the antibodies clumped together etc.

for instance: in my case my CD57 was 21. The correct normal range is 60-260.
as for my Ciq: I was in Alert status
my immune system was "sleeping", it wasn't recognizing either the Bb (burgdorferi borrelia or the Cpn) bacteria. So now I boost my immune system with vitamins and minerals. (Wheldon Protocol).

Kind of opposite of what I knew about MS. I was always careful NOT to Stimulate my immune system....now I do just the opposite. I stimulate it as much as possible....and it's finally waking up! thankfully. Now if I re-test for Lyme I would test positive....even with a flawed test as an ELISA. Why? because my immune system (antibodies)was stuck together -it couldn't recognize the bacteria -it "couldn't" fight the bacteria...

My immune system was never attacking itself.....it was sleeping.
the Bb bacteria, loves the cold....
I have a low body temp, I average 97.1
I don't like the heat, my MS symptoms flair
This is exactly what this bacteria needs to survive. Cool temperatures
and steroids. Steroids are its food source.

I just had my Ciq done again and it jumped! Good news

I hope I helped a little in answering your questions. I can only tell you what Ive learned,,,I'm not a doctor just a patient with MS/Lyme.

tory
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Postby SarahLonglands » Tue May 22, 2007 4:39 am

Napay, this is quite an old thread now and much information has been posted elsewhere. This is a good thread, for example, about a paper published by David and Charles Stratton of Vanderbilt University last October:

http://www.thisisms.com/ftopic-3016-0.html

Then I started this one just after the paper was published and I was still waiting for my front cover picture!:

http://www.thisisms.com/ftopict-3121.html

Now, though David and Stratton have had something else accepted for publication, this time in the journal "Infection"
It is in response to this half-baked German paper published in the same journal:

http://www.thisisms.com/ftopict-3407.html

But as yet we don't know the exact publication date. Here is a draft of the abstract, though:

"It has been claimed that, were Chlamydophila pneumoniae a factor in the initiation, relapse and progression of Multiple Sclerosis, roxithromycin would ameliorate the disease. We disagree; macrolides alone are unlikely to eliminate the organism but instead force it into a persistent non-replicating cryptic form, untreatable with conventional therapy. The cryptic form is likely to be a stringent response marked by a switch to anaerobic respiration, as occurs with intraphagosomal Mycobacterium tuberculosis. The cryptic form is likely to be susceptible to metronidazole. Tissue culture and mouse studies confirm this. We have informally treated a number of patients with MS with a combination of macrolides and doxycycline to induce the cryptic state, later adding metronidazole to kill it. A response akin to a Jarisch - Herxheimer reaction is not uncommon. C pneumoniae-specific antibodies often rise on treatment, indicating the liberation of bacterial antigens. In many patients neurological progression has halted and then been reversed, a rare event in the natural history of MS. We briefly report on two patients with progressive disease. This preliminary information is given here as evidence to support the theses: (a) C pneumoniae has a pathogenic input into MS (b) conventional monotherapy does not eradicate chronic infections with this organism (c) A nitroimidazole is a key component in the treatment of chronic C pneumoniae infection."
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 MacKintosh » Thu May 24, 2007 7:50 am

I hesitate to reply, as this really is an OLD outdated thread. I know of a few dozen people doing great on antibiotics and there are likely hundreds, at a minimum, between Wheldon and Stratton's patients alone. My own doctor has a couple of dozen for MS.

I am in month nineteen and, for a person who was sliding rapidly downhill without respite, I'd say I'm recovered. I'll keep taking abx for at least another six months before going to intermittent therapy, just to be on the safe side. As I told my first neuro, who was too scared to prescribe antibiotics, "You want me to save my usage of antibiotics for some unknown infection later in my life? THIS is the infection I've been saving antibiotic usage FOR! If not now, just exactly WHEN do I need antibiotics?!"

ANd, as for antibiotic overuse being a 'cause' for MS, I took antibiotics maybe three times in my life prior to diagnosis. That's about once every fifteen years. I don't think that qualifies as abuse of antibiotics. The cause of my MS is chlamydia pneumoniae bacteria and the antibiotics are purging it from my body.
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 SarahLonglands » Thu May 24, 2007 10:17 am

As it happens, Bromley, there is somone at Queen's Square taking very close note. This is an old thread, but certain things take time.

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 Loriyas » Sat Jul 28, 2007 6:50 am

I saw a new neurologist this past Wednesday. He suggested I be tested for CPn and Lyme, which I did. He also suggested minocycline, which I agreed to try. He prescribed 100 mg twice a day. It is too early to tell about any positive changes but I have experienced some dizzyness after taking it. Any suggestions about dealing with the dizzyness would be appreciated.

After reading the previous posts I am encouraged that this neurologist is willing to "look outside the box". I did not mention antibiotics to him-he suggested it to me and said that he has a number of MS patients on it. So appparently there are some neuros who are paying attention.

I am a little nervous about this but am willing to try. I did continue with Copaxone as I am not ready to stop it yet. The neuro said he has been unimpressed with any of the ABCR drugs but doesn't have a problem with me continuing it if I want. I see him next month to go over the results of the tests.

Any comments or suggestions would be welcome.

Thank you,
Lori
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Postby MacKintosh » Sat Jul 28, 2007 7:00 am

A lot of us have inner ear / balance problems when we first start antibiotics. We're starting to take the dizziness as a sign chlamydia pneumoniae bacteria have settled in the ears and are now being killed. It usually doesn't last long - a few days to a few weeks. It may also be accompanied by runny nose and a feeling of 'movement' in your sinuses. I can't help with remedies for the balance, though I'm sure someone will come along to address it for you. What I can tell you is, this is 'normal', so don't be alarmed.

Welcome to the antibiotics neck of the woods! And give that intelligent doctor of yours a kiss for me.
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 Loriyas » Sat Jul 28, 2007 7:20 am

MacKintosh
Thank you for your reassuring post. It's funny because I have been experiencing a "pressure" in my sinuses and a headache, which I attributed to allergies. So instead it must be the antibiotic working! I am looking forward to seeing the results of the tests. But until then I will continue the antibiotic since it must be doing something!
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Postby MacKintosh » Sat Jul 28, 2007 7:30 am

Lori, One thing to remember is, a healthy body won't react at all to antibiotics, so if you're having a reaction, something is being killed.

(I should add, OR you're allergic, but you'd know that within minutes or hours. The antibiotics on the protocol are pretty low-key and few people have allergies to them.)

It IS fascinating, observing your body going through this. Every time something new happened, I was thrilled, because I knew it had to be working.
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 SarahLonglands » Sat Jul 28, 2007 8:20 am

Lori, yes, I remember the night I started: David brought the doxycycline back from work and told me to start that night. I was no fan of antibiotics and had only had two short courses before, one for scarlet fever when seven and one years later for an infected insect bite. I didn't think this would work. Strangely enough, within a few hours, something started to work, much as Mackintosh describes.

The dizziness shouldn't last long, but it does show that something is indeed happening.

About the tests: I was tasted about three weeks later, when the antibodies should actually have shown higher than before starting treatment: I was totally negative for lyme and nearly non-diagnostic for Cpn, so the pathogen, as its Latin name suggests, was doing a very good job of hiding away in the brain tissue.

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 MacKintosh » Sat Jul 28, 2007 8:24 am

Sarah, That was my biggest fear: not showing positive on the test. By the time my tests came back, I'd been on antibiotics for two weeks.

I was improving so rapidly I never went into the doctor's office to find out the results. I should do that someday, but I'm way too busy living my very normal life now. :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 Loriyas » Sun Jul 29, 2007 2:44 pm

Thanks Sarah and Mac, for your help.

The dizzyness lasted most of the day yesterday (Saturday), then I took the second dose before I went to bed so slept through any dizzyness I might have had then. This morning I took my next dose and although there is some dizzyness and a feeling that my head is "thick". it is not as bad as it has been before. I'm glad that I don't have as much dizzyness, but also had the thought that maybe if it is subsiding this soon then the minocycline may not be doing anything. Or is it just my body becoming used to it? Or am I just a little paranoid about the whole thing?

Lori
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Postby SarahLonglands » Sun Jul 29, 2007 2:58 pm

Paranoia - it is very common because abx aren't supposed to work for MS. If mino or doxy weren't working at all, you would feel nothing, but at the very least it will be doing something immunomodulatory: I remember when after six months I changed from doxycycline to rifampicin, which is not at all immunomodulatory, my walking was impacted dreadfully for a few weeks.

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 Loriyas » Tue Jul 31, 2007 6:44 am

I've been taking minocycline for days now. I feel that something is working-some of it is just a "feeling" that something is different, some of it I can definitely see as an improvement. I feel more like my old self-more energy which then allows me to excercise like I used to, which then releases endorphins for the "feel good" feeling that get. It is a domino effect.

Interestingly, I woke up this morning with my left hand aching. Thisis the hand that originally gave me trouble when all my MS symptoms started. When I first was diagnosed my left hand wanted to curl. Now it just aches-and is improved once I started using it. I take this as a sign that minocycline is doing something (from what I've read from all the posts you feel worse before you feel better, right?)

So I feel I am already seeing some improvements and a looking forward to continuing. By the way, I am also taking 800 mg of NAC a day. My neuro has a product that has several items in it and NAC is one of them. I take 400mg in am and 400 in pm.

After reading as many posts as I could find about abx I realized that my disease has not progressed as far as many who have used abx and have seen much improvement. I am hoping by starting abx earlier in the course of the disease I will see the same improvement, if not even a little more. Does this make sense?

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