MS Cure?

[Gabriella7]

Here is a video entitled "MS Cure?" which I found last night produced by ABCTC Catalyst and dated Sep 17, 2012. Leave it to TV reporters to try and make a claim it's a cure but don't dismiss it lightly! It is reporting on the "infectious theory" of MS and features Dr. David Wheldon reporting on the antibiotic cocktail he put together for his wife Sarah Longlands a few years ago. I have followed this theory off and on for the past 10 years.

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There are several doctors who are treating patients with this combination. Dr. Wheldon in the UK, Dr. Ram Sriram, neurologist at Vanderbilt University, Nashville, Tennesee and Dr. Powell on the west coast. Dr. Samboni is also featured with his CCSVI vascular theory which fits right in with an infection being caused by the Chlamydia pneumoniae infection which narrows the veins. There is an Australian doctor, Dr. Thibault, who has done a venoplasty on a patient and is now putting her on antibiotics. You can also go to other websites such as Cpn Help and ThisisMS and look under the antibiotic thread to follow Sarah's progress. She posts as Anecdote on both of these sites. David Wheldon's paper on "Empirical antibacterial treatment of infection with Chlamydophila pneumoniae in Multiple Sclerosis" can be found here:

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After watching the video, reading Wheldon's paper, and reading the abstract....what is your opinion of this theory? ***Additional article found that is more up to date and published in 2010. It is 20 pages long but well worth the read.

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Gabriella

[Gabriella7]

Discussion

By now, I was hoping to get a discussion started on the "infectious" theory postulated here. Several other MS websites contain patient accounts and much more information on being treated with antibiotics. Does anyone have an opinion or experience with antibiotics they would share here? I have experience with only one antibiotic and will share it if there is any interest. If not.....I will go elsewhere to share.

Gabriella

[SalpalSally]

It's an old theory, Gabriella and if it were true, then why isn't it making he national news. It hasn't really gone anywhere. Nothing to discuss, I guess.

[Gabriella7]

Sally, sorry you feel it doesn't warrant a discussion just because it is below the radar of national news. It is an old theory but it has never received the funding for clinical trials because it uses drugs that are off-patent. It is being discussed on other sites such as ThisisMS and cpn.help where you will find pages and pages of discussion. You will find patients that have gotten better with the protocol. I think it deserves some investigation from docs as well as patients. The antibiotics are off patent and can be bought as generics so pharmaceutical companies are not interested and we all know where the neuros get their information and kick-backs....from the pharmaceutical companies!

It doesn't make enough money for BigPharma. If it turned out to be the cure....just think how many people would be out of jobs!

Gabriella

[Gabriella7]

Patient Stories

Here's the patient stories who have been treated with the antibiotic cocktail and improved over time. This will be the last post on this topic as it seems no one is interested in exploring outside the box. Go to the site and look at the banner at the top and you will find "patient stories". Left click and read....You will find a lot of positive results people are willing to share.

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Gabriella

[Gabriella7]

The Charcot Project

Well here is another video about a group who is investigating the possibility that MS is caused by a virus specifically the EB virus. They are going to be treating patients with an antiviral oral drug to see if they improve. This is called "The Charcot Project" in honor of the physician who discovered MS.

I hope we will see more and more research into finding the "cause" and treating the cause as well as developing new methods of diagnoses (such as blood tests)
rather than just treating symptoms with more and more expensive drugs.

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Gabriella

[Parsi]

I remember there had been a member who followed antibiotic protocol. I don't remember the name. I don't think s/he posts anymore, but I may be wrong. At the time I don't think anyone else here was taking antibiotics as a treatment.
I myself find the thought of taking antibiotics scary.

[Virginia]

Hi Gabriella,

I did come on a couple of days ago and watched the first video. I also read the first patient's story and plan to read some more. I just watched the 2nd video.
I have been sick for about two weeks and so have not been on here much.

There use to be a man that would come on every now and then and report on his wife's progress with antibiotic therapy. I can't remember his name, but he always did the posting and not her. He use to measure things precisely and he would video his wife as she walked across their kitchen floor with him timing her.
I could not notice any improvement, but he seemed to feel that they did which was the important thing. Wish I could remember his name, but I cannot.

Anyway, I have not given it too much thought because I like to stay away from all antibiotics if possible. I discovered early on that my MS got worse after
taking antibiotics. It begins while I am on them and my sensory symptoms (of which I have many) are so pronounced and so much worse that I can hardly
stand it. Then my overalll MS seems to get worse. I do not know if the MS worsening is actually from the antibiotics or from the infection that I would have
been taking them for. So, because of all this and the fact that I usually get very sick on my stomach when taking antibiotics I have read only a little about this
type treatment. I did use to read all post that were on here about it - especially the one person that I mentioned. However, I did not think it was anything
that I could do. In addition, I do not know of a Doctor who would give me this treatment. Certainly not one of the ones I have now. That could be a real
problem. I could loose my Doctors that I now have and find that I am worse than I am now.

This is not to be negative about this treatment. It is just that I do not feel that at my age (I am in my seventies) that I should be trying to go too far away
from my current Doctors, as there are other things that need to be treated. While, MS remains my single biggest challenge there are other things that are and
will continue to crop up along the way.

If I knew something would help then I would take my chances on leaving my Doctors, but this is a very slow and long time treatment that may or may not work.
But I did only read the first patient story and I do owe it to myself to read the others, which I will as soon as I can. Today, I am going out and try to get some
groceries in.

I am truly sorry that things have not gotten better for your dear husband. I know you are tired and frustrated.

[Gabriella7]

Hope

Thank you for your very thoughtful and helpful reply, Virginia. I wanted to get some feedback and you have contributed just what was needed to begin a meaningful discussion. I have had to take a lot of antibiotics over the years since I was in my twenties because of bladder disfunction and UTI's. I had surgery on my bladder which left me somewhat incontinent when I was 40 and it has just progressed to total incontinence over the years. In hindsight, the MS and MG played a big part in these disfunctions however, the doctors never referred me out for any evaluations and just treated the problems and did not try to find the cause. Come to think about it.....isn't that what they are doing now?

I'm of the same mindsight with regard to antibiotics. Over the past six months I've had a recurring UTI and the urologist refused to treat me any more stating that he didn't want to create a "superbug". I went instead to my PCP's office for the urinalysis and culture. I actually saw the PA instead and he wanted me to try Cipro as he said the Macrobid that I have been on for months was not working for me. Cipro is counterindicated in "myasthenics" and I told him so he looked it up. We discussed it and I decided to try it anyway. It put me in the bed with extreme weakness and sleeping 16 hours out of 24. I go back on Monday to see if it cleared the bugs out of my system. It was strange that I broke out with hard bumps all over my head.

There are potential side effects with taking antibiotics such as yeast overgrowth so one needs to take a probiotic whenever an antibiotic is needed. You can develop C. Diff of the intestional tract as well but at this time of my life I need some hope for myself and my husband so I am grasping at straws. If one looks at the possible causes of MS... an infectious cause is the most plausible. The auto-immune theory that is the basis of current research could be correct as well ...as our bodies are just trying to fight the bacteria/viral as they were created to do. The fact that research has not been able to pinpoint the bacteria/virus to blame just means that there might be multiple causes and science does not have the means to find the cause. However, I don't believe that our bodies suddenly turn on a MS switch buried in our genes without a reason. We do have to have a genetic predisposition for MS but there is also an environmental factor at work here which needs to be found.

The poster you remembered is Ken who posted as "Notasperfectasyou". His wife was treated at Vanderbilt University by Dr. Ram Siram with the antibiotic protocol. Dr. Siram, a neurologist and Dr. Stratton, a microbiologist were conducting a clinical trial and developed the test procedure for detecting cpn bacteria as well as the antibiotic protocol for treating it. Ken posted videos of his wife while he held a stopwatch to time her 25 foot walks. I don't know how she has progressed since he last posted. I will have to see if I can find any of his later posts. There was another person who lived in Florida and drove up to Nashville every six months to see Dr. Siram. My husband and I went to see Dr. Siram but I didn't qualify for his study because of being already classified as progressive/relapsing. He did tell me he thought my MS problems were vascular and referred me to a doctor at Emory University in Atlanta. This fits in with the chlamydophila pneumoniae bacteria which causes narrowing of the veins. This is explained on the video with the patient in Australia and Dr. Thiboult.

I am still waiting for the CCSVI studies to be completed and consider it too risky at this time. I hope this discussion has opened the way for more to follow.

Gabriella

[SalpalSally]

If MS is caused bt a virus, Which I happen to think mine is, wouldn't anti Viral meds be more effective than ABs? I only want to reserved ABs for bug/germ type infections so that I won't over use them and they become ineffective.

Just my opinion.

[Gabriella7]

Bacteria/Virus

Sally, Have you watched the videos? This is all explained in the videos....Antibiotics treat bacterial infections such as cpn and anti-virals treat viral infections which is what the Charcot Project is working on. Treating MS with either one is going to depend on what is causing the MS....a bacteria or a virus. When you have a bacterial infection such as a UTI a culture will tell the doctor which antibiotic is going to work the best to clear the infection and if the oral antibiotics no longer work they have IV's that can treat the patient. So it is not a case of saving the antibiotics for the big infections....if you have an infection it needs to be treated especially if you have MS because an infection can cause a relapse.

In the case of cpn bacteria, it takes a combination of 3 antibotics working at different stages to eradicate the bugs and then one should take them long term. I have never been given even one of those 3 antibiotics to treat any urinary infection that I have ever had. I did take the first one (doxycycline) for a month while I was trying to find a doctor who would treat with this protocol. It is prescribed for skin infections (acne) long term so there isn't much risk associated with it. The PA nurse in my first neuro's office prescribed it for me when he refused to prescribe anything other than Tysabri. I fired him!


Gabriella

[Gabriella7]

Hope

I found another research paper written by the young intern who was assisting Dr. Sriram in the MS Clinic at Vanderbilt when my husband and I went. I haven't read it yet as it is so late but will read tomorrow. Just wanted to share the info before it gets lost in the shuffle of papers. Our doctor called late today to say the latest EMG points to the diagnosis of ALS, Lou Gehrig's disease (US) or motor neuron disease (UK) for my husband. The Neuro is going to send his referral over to the doctor who is the head of the ALS Clinic at Emory University as he is considered the best. This post may be my swan song for a season.

Only registered and activated users can see links., Click Here To Register... This research paper was dated 2010 and is published in the official NIH publication.

Gabriella

[Kieran]

I have Secondary Progressive MS; I was diagnosed in '98. Through the council of my nutritionist I tested positive for CP.
However, I am following a prescribed natural anti-viral campaign. I use supplements derived from olive leaf and oil of oregano. I don't like to think what a year of anti-biotics would do to my microbiome.
I don't drink alcohol and don't eat dairy or gluten.
6 months in and I can already climb the stairs; previously I struggled with one step.

[Howie]

I also was DXed in '98. My first exacerbation was mild, the second was severe, and I started SSI. Shortly after, I started the antiviral Valtrex and did it for a year and a half. Then I stopped for several nonmedical reasons.

I haven't had another exacerbation since. This only means that is how my life unfolded after taking Valtrex. For ME, it looks like a cure, or close to it, and I'm very thankful for that.

[Lazarus]

I have Secondary Progressive MS; I was diagnosed in '98. Through the council of my nutritionist I tested positive for CP.
However, I am following a prescribed natural anti-viral campaign. I use supplements derived from olive leaf and oil of oregano. I don't like to think what a year of anti-biotics would do to my microbiome.
I don't drink alcohol and don't eat dairy or gluten.
6 months in and I can already climb the stairs; previously I struggled with one step.

Welcome Kieran. I was diagnosed in 1990 and have been progressive fo years now. I have taken many drugs over the years all with the goal of keeping me able to continue farming. We have been successful with 8 years of IVIG which is a natural blood product. Now I take a chemo called rituxan which is keeping me moving.

I have been a vegetarian for 50 years and eating healthy is crucial for my well being. Our farm is organic so I have ready access....lucky me...

We all struggle to find the right mix and we all watch that delicate balance. Cause and effect is impossible to determine but keeping ourselves as healthy as we can....well, that can not be bad!