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Just read this article in the National Review (June 2012)
Deleted my own thoughts about this. Take from it what you will. But, I think she should be more upfront about her "therapies"
http://www.nationalreview.com/articles/ ... ina-trinko
Page 2

if the chemo therapy changed the gut microbiota or the glucose metabolism in some way, it may well help.

but so does a gut flora transplantation, Metformin, or heavy fasting..

http://www.thisisms.com/forum/general-d ... 8-330.html

Hi,

I don't find this surprising at all. I've often wished I had chemo as an available option. I've stayed well for many years by agressively attacking EBV. It's well understood in the medical literature that a protein called BCL2 allows EBV to bind to the B cell which then immortalises it. The infected cell can then travel through the CNS and cross the blood brain barrier. An EBV infected B cell gives off two molecules of oxygen, called superoxide. When this comes into contact with naturally occurring nitric oxide there is an exponential reaction creating a highly reactive subsubstance called peroxynitrite. This substance disables many, many enzymes in the chain of reactions that convert sugars into useful energy and drive other pathways. It will result in low ATP, low uric acid and low levels of non essential amino acids. The symptoms experienced would be fatigue, motor skill problems and other MS reactions. Left untreated ,the viral load will eventually overload all other treatments of symptoms.
I'm in two minds if this process disables a range of nucler receptors or we started with that disadvantage and that opened us up many of the issues identified in many posts.
EBV needs B cells as a host as it cannot replicate by itself. If you knock out the B cells with chemo then the EBV will not survive. Providing you have done a good enough job when new B cells develop they will be uninfected by EBV and the MS symptoms should follow the path this lady has experienced.

Regards,

Make sure to read the whole article, not just really's selected text----
The chemo did not put her in remission. She was ill for over another year.
The natural course of MS, without any drug treatment, relapses and remits, and everyone's MS is different. People diagnosed later in life, like Ann Romney, do better, according to a new Canadian study that looked at treatment naive patients.

Data demonstrated that by measuring time to outcomes from birth rather than from onset of MS men and women have similar disease outcomes (time to reach EDSS 6); an older age at onset is favourable; relapses do not affect long-term disability outcomes and early relapses only impact progression over the short-term. Whilst young patients with MS may gain long-term benefit from treatment with DMTs, older people may find limited benefit. Interestingly, MS relapse rates naturally decrease over time and a five year relapse-free period was common (occurring in 77% of people with relapsing remitting MS) independent of drug therapy.

http://www.thisisms.com/forum/general-d ... 20266.html

here's the rest of Ann Romney's story.....

Treatment succeeded in reversing some of the numbness, but there was no instant miracle, and Romney’s personal life continued to unravel. Mitt Romney took over the laundry and cooking. (Asked what kind of cook he was, sons Tagg and Josh Romney say that Mitt Romney’s go-to meals are spaghetti, and pancakes with bacon.) “He made me feel really good about the things that I couldn’t do anymore,” Romney says of her husband. “I wasn’t able to go to the grocery store. I couldn’t cook dinners. I couldn’t do anything. And he just rolled right with it and just started doing everything.”

It was a year later, after moving to Utah---

Through all this, Ann Romney wondered how long her ability to walk, even with difficulty, would last. She recalls thinking, “I’m pretty sure I’m going to end up in a wheelchair, pretty sure I’m going to be really bad.” She resolved to take action and made a decision: “I want to do things that I love so much in life before I can’t do them anymore.”
So Romney bought a horse, Buddy. Romney is quick to tell me that Buddy wasn’t an “expensive” horse. “Having him,” she says, “was like the coolest thing in the world.”
Still very weak, she could barely ride the horse: “I could only ride, like really ride, for like five minutes” before getting too worn out.
But Romney’s affection for Buddy transformed her outlook on life and gave her a reason to push herself to climb out of bed each morning. “I noticed that I had this euphoria afterwards — it kind of got me out of that fatigue place for a little bit, just for a little time,” she says of her riding. Slowly, she began to feel slightly stronger.

Hi,

I agree the story is superficial but a chemo based approach isn't age based either-

see http://www.abc.net.au/7.30/content/2010/s2903067.htm

or http://www.stemcellcentre.edu.au/NewsEv ... lines.aspx

or http://www.dailytelegraph.com.au/news/n ... 6004742545

or


I think the trick is to knock out the B cells. Some of these approaches focus on T cells and some seem to be not much more than having a go at something.

Regards,

This is probably the best illustration-

http://www.msstemcell.com/

Cheer,

I have to agree with you in taking a lot of caution when in comes to determining the effect of chemo and other MS drugs. What works for one person can be very detrimental to another. We often hear about the success stories only and not those who get no benefit whatsoever.The relapsing/remitting nature of MS makes it almost impossible at times to figure out if a treatment is working.

Ann Romney's horse story is interesting. For about 5 years, my wife took hippotherapy (horse riding therapy) in Toronto. There was a special center called CARE which had about 15 horses and used this therapy for a variety of children and adult riders. Marg used to suffer a lot from leg spasms but after an hour session on the horse, these would disappear for several hours. Quite amazing.

Harry

The idea behind using chemotherapy is to reset the faulty immune system back to a naive state to eliminate the memory mechanisms that are believed to cause MS. There are currently different approaches to this in various protocols, but chemotherapy is the unifying concept. The methods range from complete ablation of the immune cells which requires harvesting stem cells prior to chemotherapy for re-infusion after to regenerate the immune system to chemo only protocols such as Revimune developed by Johns Hopkins.

One of these protocols is in phase III trials which is being conducted by Dr. Richard Burt from Northwestern University. I would strongly advise those who are interested in this watch a three part lecture by Doctor Burt to get the facts about these types of treatment.
http://m.youtube.com/watch?gl=US&hl=en& ... 3TgPFy1Ozo

Scott1 wrote:Hi,

I agree the story is superficial but a chemo based approach isn't age based either-

see http://www.abc.net.au/7.30/content/2010/s2903067.htm

or http://www.stemcellcentre.edu.au/NewsEv ... lines.aspx

or http://www.dailytelegraph.com.au/news/n ... 6004742545

or


I think the trick is to knock out the B cells. Some of these approaches focus on T cells and some seem to be not much more than having a go at something.

Regards,

I have added the color emphasis to Scott's words. FYI Beta cells are the cells in the pancreas that produce insulin.

CVfactor wrote:The idea behind using chemotherapy is to reset the faulty immune system back to a naive state to eliminate the memory mechanisms that are believed to cause MS. There are currently different approaches to this in various protocols, but chemotherapy is the unifying concept.

I didn't realize that a MS patient's immune system was faulty. Here is what Dr. Stys' research stated..

"The authors of this article challenge this conventional view of MS and propose that it is in fact a neurodegenerative disorder with relapses occurring as a consequence of immune reaction to the breakdown products from the degenerative process."

If indeed a faulty immune system was the cause of MS, then the chemo/DMD medications would have solved the problem ages ago. So far, we have many different theories about the cause of MS....unfortunately nobody has been able to prove any one of them. At least scientists are looking at other areas now.

Harry

The point was that she used chemo. I was only offered FDA approved treatment. (which were available in '98 when she was diagnosed).

reallyreally wrote:The point was that she used chemo. I was only offered FDA approved treatment. (which were available in '98 when she was diagnosed). Maybe I am mistaken, but I believe I have to be in a clinical trial (which I am going to be) for a DR. to try a non approved therapy? Or, at least failed every FDA approved therapy and getting worse. Again, maybe I am wrong.
And with a little look around. The drug could have been Rituximab a "B cell" therapy. There are some articles with Dr Weiner and research with the drug. This is the drug that made it with huge success into phase 2 clinical trials. I think though, sadly, it will become generic in the next couple years. So, there will not be a phase 3.

Any time a patient uses a drug that has not been approved for his/her specific disease, then its use is called "off label". As long as a doctor prescribes the use of the drug, then it is OK and does not need FDA approval.

FDA approval is required if you want to advertise a drug for a specific disease. Clinical trials are required to prove to the FDA that the particular drug meets certain criteria in the disease's treatment.

Over the years we have seen many drugs that have shown tremendous promise in the treatment of MS. Even during some clinical trials, the results look promising but once the medication starts getting used in the general population, the results often become far less effective. The CRAB drugs are but one example.

Harry

Hi Again,

Rituximab is a monoclonal antibody that targets one receptor on a B cell. There is some debate about whether or not it is specific enough to just bind to the target receptor only. The idea is to block a receptor to turn it off a bit like putting a cork in a bottle. MABs can be used to turn receptors on or off but they need to be highly specific to work. Theorectically it should work but this is at the edge of current thinking. Rituximab tends to be used for things like lymphoma where a failure is just a fact of life. Good luck trying it.
I put this link up earlier and the flow of conversation sounds like it didn't get opened. This lady had chemo and makes the point that there are many different approaches that sound the same but are very different. She's been there so warrants being listened to.

http://www.msstemcell.com/

Regards

Hi Scott1,

Dr. Burts phase III FDA trial has a lot of promise which appears to be the case of the person shown in your link.

there is a new facebook site dedicated to people who have gone through the MIST trial as well as HALT-MS (which is also entering phase III) and also BEAM treatments overseas.
http://www.facebook.com/login.php?next= ... 1840242%2F

Edit: It looks like Carmel Turner (the person in your link) is one of the administrators of the Facebook site.