This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,

as far as I understand if MS is caused by CP infection the disease should get much worse if the immunesystem is being supressed - do you agree on that?

As studies show chemotherapy agents like Mitoxantron or Cyclophosphamid and steroids are effective for reducing MS severety - maybe chemotherapy could even halting progression.

How can this be if these agents are heavyly supressing the immunesystem. So that the CP infection should become worse.

Could anyone please explain where I am going wrong, if I do?

Thanks
--Frank

Dear Frank, I have to ask what you mean by "work?" If you think that working is controlling, limiting, or slowing progression, then, yes, Tysabri might "work" in doing that for SOME MSers. On the other hand, if you think that working is the effective treatment of a factor that is causing damage, your idea of "work" is in line with ours. We are approaching MS treatment with a completely different mindset as compared to most. We are fixing a problem, not just making feeble attempts to keep it on a leash. We reject the ideas that MS is incurable and untreatable. Controlling symptoms and possibly slowing progression is not good enough for us. To anyone who questions what we are doing, we say, "What we are doing is working, and it's safer than the alternatives."

A few months ago I entered a post here to the effect that, with regard to deciding to do a combined antibiotic protocol and sticking with it, people with progressive forms of MS definitely hold an advantage over those with remitting forms. Their vision of where they are headed is clear, and their options are fewer. Sadly, by the time someone with RRMS makes the transition to SPMS, there is much more accumulated damage, but then they will have arrived at the same point of clarity about the future. It's a tough thing to go against the grain and to reject the current popular model of MS. After all, this is a mysterious and problematic disease. My best estimate of the current state of affairs in the medical mainstream is this: they don't have the answers, they are stuck in a narrow mindset and feel comfortable with so much company, they don't really believe in the possibility of effectively treating the disease, and so, there is huge effort and financial expenditure thrown at tinkering. Tinkering with MS symptoms and processes is all they can imagine to do at this point. It will take decades for a major shift in thinking and treatment to occur. Perhaps you feel you have plenty of time as your MS is classified as remitting. Please, every time you have a relapse, remember what you have learned here, and weigh your accumulating damage against the comfort of doing what the majority does. My husband has SPMS, and he doesn't have decades to wait for the medical mainstream to change. We are comfortable with the safety of his treatment, and we are thrilled with his improvements.

If I seem very intense about this, your impression is correct. I want to help you, but acceptance of the concept of treating MS with a combined antibiotic protocol requires a huge change in thinking, time spent investigating the information yourself, and a thorough reassessment of the soundness of the premises of your "comfort zone." It doesn't matter how many neurologists push the current popular MS medications at us for lack of something better, my comfort zone does not include settling for risky treatments that MIGHT help SOME MSers SOME of the time while my husband's body and mental abilities decline. It does include committment to an effective treatment of the illness (not the symptoms) that is comparatively safe and even comparatively inexpensive.

that was very well said mormiles..

Thank for your answer. I apreciate your efforts to finding a better way of treatment for MS, and sharing your experiences with others.

But could anyone come back to the point I stated, that its quite confusing that cyclophosphamide and mitoxantrone are able to slow or maybe halt progression.
Because these drugs do heavly supresses the immune system I would rather guess that CP gets completely out of controle (of the immune system) and MS progression goes on even faster...

Your right about the difficulties to find the right therapy. After Copaxone didnt do the job anymore I just switched to Tysabri which should be the strongest - but regarding PML, the most dangerous - aproved MS drug.
When I came to read about the astonishing results using ABX I'm not too sure anymore.

--Frank

I am not going from any specific scientific material here, just memory and understanding. I think the issue is that the immune system already isnt that great at controlling the infection, so suppressing it doesnt let it run wild comparatively.

I may be mistaken, but in the VERY early trials of abx's for MS, I think the dr's were using injected (drip) abx's with steriods. The steroids were added from my understanding to minimise inflamation caused by the die off of the bacteria.

Anyway, I am sure that any incorrect statements above will at least trigger people to correct me, and thereby answer your original question

Frank, You're right...sorry for becoming impatient earlier. Suppressing the immune system does not stop infection, but in fact, allows for the continued spread of infection. One can only guess at how much the spread of the infection is accelerated by snuffing the immune system. Even if one of those immune-squashing drugs were effective at holding progression at bay for a while, for how long? And once it fails, how quickly would the MSer decline? I don't know the answer, but the thought of it frightens me.

I'm not 100% against drugs that have an effect on immune system action. The only one I agree with is LDN (low dose naltrexone). This drug does not snuff the immune system, and it is very safe. My husband is taking it also within a comprehensive treatment regimen. After his treatment ends, I hope he will agree to stop the LDN occasionally so that we can be assured that it is not masking inflammation from infection. He probably will not want to stop it for very long periods, though, as it has had a very nice effect on his urogenital symptoms.

Frank, I can say that in the early trials of Campath, which even more so than Tysabri, snuffs out the immune system, some people with SPMS were infused along with RRMS people. They at first showed improvement, but then started to get rapidly worse, even faster than they would have done with no treatment. Therefore, the drug was henceforth given to only RRMS people. You will have to work out why this happened yourself: they were so shocked at Addenbroke's that this was happening that it is difficult to find any reference to it now. My guess is that the new immune system is able to fight off a CPn infection in RRMS people, but it isn't so strong with SPMS people and they succumb.

Steroids suppress inflammation and are given successfully if needed whilst on an abx regime. However, since steroids encourage the growth of CPn this is best kept to a minimum

Sarah

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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.

Frank.
The immune system in trying to eradicate Cpn, or other infections does a lot of collateral damage to neighbouring cells. If the Cpn is in vulnerable places like the brain or the CNS then dampening the immune system is likely to result in an apparent remission, because it is lessening the damage. But as Sarah says for how long? It is like setting a time bomb.
The idea of autoimmunity is a hook on which many diseases are hung, without much evidence to support it. For example Alopecia Areata, (partial relapsing remitting baldness) is supposed to be an autoimune disease but having done the Combined Antibiotic Protocol for the past 7 months my hair is growing back and staying put for the first time in 10 years. In the 30 years I have been suffering from this condition, I have had good hair years and bad hair years, but nothing has reversed the process in quite the same way and to the same extent as that CAP.

I just came across the information that the cytostatic drug Mitoxantron (Novatron(r)) has a significant antibiotic effect.


Furthermore I read the abstract of this new study concerning varicella zoster virus in MS:
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum

I found that statement especially interesting:
"All the CSF samples from the individuals without neurological diseases were negative for viral DNA. Genomic sequences of HSV-1, HCMV, EBV, HHV6, and JCV were found in patients with MS and other neurological diseases without significant differences between the two groups."

Greets
--Frank

But Frank, CPn isn't a virus, its a bacteria.

Mitoxantrone is a very powerful antibiotic. Too powerful to use as one, so its only real use is in chemotherapy, at first with cancer, now, it seems, with MS. It makes you liable to heart damage if used for too long, so surely one is better off with a doxicycline/macrolide combination.

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.

I know its a bacteria, but mormiles husband is using a regime that also includes antivirals, and I thought it might be interesting...

I pointed to the antibiotic potential of Mitoxantron, because it could provide a clue why that cytostatic drug works on MS.
Not only because of the immunesupressing, but maybe because of the antibiotic effect.

--Frank

Yup, that's what I think, so enjoy what I am going to send you tomorrow!

By the way, Mormiles and I are the best of friends.

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.

Chemotherapy, mitoxantrone and statins are good at wiping out bacteria and viri (viruses) so one would hope to have some halting of progression after a dose of these. I'm going to add statins to my regimen of antibiotics as am a bit concerned about a new symptom or something weird happening to a hitherto ok leg (wish I were a centipede). Statins have been shown to be good anti-virals and have been recommended for the general populace should there be an outbreak of bird flu plague.

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Tims, what is now the opinion / knowledge about the mtx? My condition deteriorated very, EDSS = 6 I was on the abax 1.5y , 4 years ago. Neuro proposes mtx or siponimod. I wonder if it is worth returning to abax? any advice?

hi all,

has anyone here given serious thought to a documentary for something like this? i think its compelling stuff. if a person was followed through beginning treatment and evaluated by a physician to clinically assess improvement, it would bring so much awareness and hope to others. also, from my own personal bias, its a great grass roots middle finger to big pharma.

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Dx: 9/8/11 RRMS
Gluten and dairy free diet
copaxone x3: let's hope the third time is the charm!
http://mylaceybrain.wordpress.com