Investigating Chlamydia Pneumoniae and MS

[hexed]

Read a really interesting article today regarding some possibility that MS could be related to a infection Chlamydia Pneumoniae. Any opinions on this from the MS community? Seem promising, but I try to not get too excited with things like this.

http://www.abc.net.au/catalyst/stories/3572695.htm

[techie]

I never get excited by anything that says 'cure' with the title.
I will believe it if it hits the news on TV
techie

[SNOOPY]

The article, although current, is based on an old theory. This theory has been around for many years with no current clinical studies to give any real proof to the theory or statements made.

Sorry....

[hexed]

I never get excited by anything that says 'cure' with the title.
I will believe it if it hits the news on TV
techie

I think that is discussed in the article. Specifically how using the word "cure" is not really accurate. I am the same way though, in fact, I get more pessemistic if anything I read uses the "c" word.

The article, although current, is based on an old theory. This theory has been around for many years with no current clinical studies to give any real proof to the theory or statements made.

Sorry....

Regardless of how long it has been around, I think that is the point of the article. The big question is "Why hasn't the medical community/MS Society etc invested in clinical trials of this procedure.

More specifically, my CSF could have been tested for the presence of this Chlamydia Pneumoniae when they took it from me 3 months ago. IF anything it can be used to get more statistics from new patients and good statistics for research.

CCSVI is well covered in this subforum, and it is also very well funded in regards to the clinical trials. TBH though, it doesn't seem to be panning out for the majority of people. Specifically to have the procedure done and see a regression of symptoms in the long haul. It seems the majority of people either experience a short term of feeling "cured" until they need the procedure again. Others experience absolutely no relief from their symptoms.

The article itself seems more critical of why we haven't been at least investigating this possibility. From the preliminary investigation into this, it seems a hell of a lot safer to test on people than say.. Tysabri.. or Gilenya. And those are approved drugs. It also sounds like the side effects wouldn't be nearly as crappy as taking one of the CRAB drugs (I'm on Rebif).

Not trying to start some sort of major argument here, but I feel like the responses here are not really getting the spirit of this article. Not trying to be a conspiracy theorist.. but if big pharmacy companies don't see tons of dollar signs, then it just isn't that interesting. What would happen to a company's bottom line like Biogen if all of a sudden the cure for MS was made available and it was something very cheap?

[Ga dancer]

I know that Chlamydia Pneumonia bacteria research has reached a dead end, but I really think that the association was not thoroughly investigated.

My daughter-in-law was having a lot of MS type symptoms, the worst was fatigue, and also had non-MS symptoms of red, swollen blisters on hands, feet. Very painful, difficult to walk. Blood work non-specific, and rheumatologist diagnosed her with Lupus Like syndrome, whatever that is. She needed to feel better because her youngest 2 were below 5 years old and wild.

She originally got sick after the kids got Fifth Disease, they got better quickly and she never recovered. She researched rheumatologists and found one in Tampa who was supposed to be great and flew to visit him. The only thing he found after multiple blood tests was Chlamydia Pneumonia. It can hide, requires a very specialized lab test that most places cannot perform. Triple long term antibiotic treatment offered her relief - but she got much worse before she got better. Apparently when this nasty bacteria was targeted and started to die she felt much worse.

I wanted testing because of the possibility that I gave it to her or she to me, and I certainly did not want to be around my grandchildren for fear they might get sick. I had to travel to Vanderbilt in Nashville to get tested, and I had to move heaven and earth in order to get an appointment with a doctor there who would refer me for the test. I tested negative and I am disappointed.

Since my disease started with an infection which never got better, I was hoping for an easy fix and I am unconvinced that my disease is not infection related. I am also suspicious that the drug companies would not be doing much research into this bacteria and its effects. Antibiotics are so much cheaper than interferon.

[hexed]

Also including a link to Dr. David Wheldon's site outlining this treatment


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

[SNOOPY]

hexed,

MS forums were boombarded with those 'selling' the theory of the Wheldon Protocol for quite a few years. It was pushed to the point of being obnoxious.

The Wheldon Protocol claims it helps cure or improves many conditions. As I stated before, there has been no current clinical studies. There were clinical studies done back in the early 2000s but obviously not much came of it.

What is claimed by the Wheldon Protocol can happen naturally with MS. The Whelodon Protocol is not miracle and is not being kept from the MS population or ignored, it simply didn't show promise.

You can believe as you choose. You can even discuss The Wheldon Protocol with your neuro. Unfortunately for you, you are not going to get much positive feedback from MS forums or the medical community.

[MacKintosh]

Wheldon Protocol Success Story

Hexed, I suggest you go to the cpn help site (if you search "chlamydia pneumoniae antibiotics" you will find it).
I'm a little gunshy about posting here, but here we go. A few years ago, I was roundly chastised for posting here about this recently identified bacteria (1990's) and its treatment protocol, which was developed by Vanderbilt University.
As we all know, studies and development of drugs and drug protocols take FOREVER and I didn't have forever, the way I was sliding downhill, so I just did the abx treatment, based on what seemed to be pretty simple science.
I am now fine. We don't have to call it cured, but I am fine. My short term memory is back, my ability to balance with my eyes closed is back, my recall of vocabulary is back, as is my ability to swallow, hold a glass in my left hand, and maintain a normal body temperature. My left foot drop is gone and I no longer trip over invisible specks of dust. I wear high heels and I drive a stick-shift car. I'm also very busy restoring a hundred year old house and supervising a crew of nine, rehabbing another home.

I was an investigator by profession, so I did a serious, comprehensive investigation on this treatment, its originators and a couple of its main proponents. And, in the end, they checked out. Since I didn't have a decade to wait for more studies, I started treatment based on the Vanderbilt study. I have never been sorry I did. (I have never done any of the CRABS or other scary chemicals.)
Vanderbilt has just hired an additional research doctor to continue (no, it did not fall by the wayside) their research into chlamydia pnumoniae, and a few other institutions are also investigating it. Dozens of U.S. physicians, as well as many throughout the world, are prescribing it.
I don't want to get into another huge philosophical debate here again. The last one was emotionally draining and unproductive.
Let's just say I was very proactive in my search for an answer as to why my body would suddenly start chewing on its own myelin. A bacterial infection that hides inside the cells made more sense to me than my body flipping a switch and suddenly going belly up

If you want to discuss it, please message me privately. And, if anyone wants to attack me personally, please hit the 'delete' button. We are all entitled to our own choices in treating this disease and I have made mine. It was cheap, it was simple, it didn't make money for anyone. And it worked.

[Ga dancer]

Hi McIntosh,

I believe in antibiotic treatment because I have been continuously sick since 2005 with non-stop sinus infections, had 2 PICC lines, surgery, truckload of antibiotics by mouth, positive bacterial and fungal infections. I received IVIG because of the infections and my MS improved drastically.

I traveled to Vanderbilt for the C. Pneumoniae test and it was negative. How are you obtaining treatment?

I'm sorry, I am not able to PM you, I can't figure out how. My cognition is really worrisome to me.

[Jules59]

I, too am VERY interested in this empirical research!

After starting on Aubagio this past January, I saw a YouTube presentation interviewing several doctors, including microbiologist David Wheldon regarding what Dr. Wheldon did to help his wife Sarah. See below:
http://www.davidwheldon.co.uk/ms-treatment.html

http://www.youtube.com/watch?v=EpMvDe8-qsM

I studied his report thoroughly and recalled seeing one of the authors of research work that Dr. Wheldon mentioned, Dr. Sriram, when I was first diagnosed. Sriram's research work at Vanderbilt was based on the theory of viral/bacterial infection causing MS. He had a write up in a local Nashville magazine regarding his use of antibiotics for MS at that time, but if I recall, it was not very successful. Dr. Wheldon suggests that perhaps the reason was because it was not administered for a long enough time, and was only one antibiotic. His paper cites many other researchers work regarding Chlamydia pneumoniae infection. See http://www.davidwheldon.co.uk/ms-tre...ml#anchor15516


Dr. Wheldon's research has really made me re-think about the treatment road I have chosen. He doesn't call it a cure, but perhaps something a WHOLE lot cheaper and perhaps more effective than anything I've ever heard of is out there short of expensive and dangerous stem cell transplantation, which may be, if in fact it is a persistent parasitic bacterium, eradicating Cpn by using an extremely drastic method.

A gut feeling? Yes, but there are several things that make me think this way:

1. I was asked when I was first diagnosed if I recalled having a cold/flu/upper respiratory infection before I exhibited symptoms. Why was that?;
2. Why is it that when I get an infection and am prescribed antibiotics, I ALWAYS feel a little better during the course of taking them (although afterwards I return to the status quo);
3. When I DO get a cold or upper respiratory infection I ALWAYS have a flare up of my symptoms (Dr. Wheldon suggests that RRMS can flare when new Cpn by infected droplets from sneezes/coughs of those with colds/flu/upper respiratory infections provokes a new host response - otherwise relapses don't occur);
3. Even the CCSVI theory of Italy's Dr. Zamboni could be connected to Dr. Wheldon's research that Cpn infection causes the narrowing of blood vessels;
4. Could my high blood pressure (and my bp heretofore was always low until the last 18 months) be due to the narrowing of my blood vessels and the overall time of infection of Cpn?
5. Could my decline from RRMS to SPMS be due to Cpn and it's infection?

I know that it's all about the money - if this simplistic and cheap method of treating MS if effective (although the protocol is NOT without side effects and the length of time varies from person to person as well as there being a maintenance schedule throughout your lifetime) were to be broadcast - why, imagine what it would do to our economy! You can bet that most of the medical community would not want you the patient to know about it!

Just my 2 cents...

[Myoak]

Dear Mackintosh, hexed, and Jules59, thank you for your excellent posts!!!

Since none of the current meds treat the unknown cause of MS it is always important to continue looking for what initiates MS if we are ever to find the best way to treat the disease.

It is unfortunate that there are always a few sad characters that have nothing more to do in life than attack (out of ignorance or on behalf of drug companies) those presenting successful alternative treatments. Their attacks are as predictable as they are ignorant.

The cause of MS is unknown; however, if research someday proves that MS is initiated by a viral or bacterial infection, as many doctors believe, Dr. Weldon’s successful treatment of his wife’s MS may become a pattern to follow. Dr. Weldon’s wife has a testimony which is entirely believable. Those who don’t believe her probably haven’t taken the time to give her a fair hearing.

Thank you all for the excellent links! They contain valuable information about one MS theory and treatment every MSer should be aware of. Let the naysayers blab and criticize all they want it doesn’t change the fact that Dr. Weldon’s wife was tremendously helped by his treatment protocol. Thanks to those with the courage to present that fact. God Bless You!

[Jules59]

Additional website to see regarding CPn

www.cpnhelp.org

And thank you Myoak, for the kind words! I fully expected somebody to shoot holes in my opinion, but I tell my daughter all the time that the more I decline in health, the more "out of the box" my thinking and researching becomes and the more willing I am to take risks to try to improve my health. I just want to be my "old self" again (don't we all?)

[chiromom1]

Yes, Chlamydia makes perfect sense!

--------------------------------------------------------------GET EXCITED!!! The reason that there are not many many trials out there is because the drugs are cheap, and no one stands to make money with this antibiotic treatment. My first degree is in Bio-medical science, and this information make biological sense.

Google search (minocycline and MS) There are studies out there examing this and it holds a lot of promise. I have been on minocycline for two years now, and have not had a new attack or flare up. I am seeing my doctor on Friday to pursue adding the rest of the antibiotic regimine.

Look, the side effects of Wheldon's protocol are by far less than the MS drugs that are out there...they just don't cost several thousands of dollars a year.

A bacterial infection explains the vascular component of the disease as well, as well as low grade fevers, fatigue etc...

The Wheldon protocol can be found here: ok, I can't post urls yet...here is as much as it will let me post...google it

davidwheldon.co.uk/ms-treatment

Check it out...see you doctor, and fight for the chance to try and see if it works for you! I am not bothering with my neurologist, as I know he will be quick to be defensive...Why is there such a turf war? oh yeah...$$$$

[aspen]

I've looked into it too ...

I have not yet been diagnosed, but I've had three rounds of antibiotics since everything started up in January and EACH time, within a few days of starting, I become symptomless. Most recently I was treated for a UTI -- I felt wonderful by day three. Started slipping after it was done, but rechecked and I no longer had a UTI, so it wasn't that infection causing pseudo-exacerbation stuff.

I believe there is something to this for a subset of people with ms. I don't think it's necessarily all the same bacterial cause. In my reading I also found that infections of enterococcus sp. can, if not treated, "seed" into other tissues including the brain and cause neurological damage.

I don't think this is so far-fetched.

[JerryD]

Now that I am aware of this protocol of Dr. Wheldon, I don't think I could get my doctors to investigate it. They have their ideas about this disease and they don't want to try anything 'out of the box'.