This Is MS Multiple Sclerosis Community: Knowledge & Support

I have ramped up consumption of superoxide dismutase (SOD) to 12 pills of 250iu each, sometimes I have taken 16. This is partly as a reduction in the painful paresthesia affecting my left leg seemed to correspond with taking the sod. However none of my other deficits feel much better so the SOD may not be doing anything very much after all. Still it's nice not to have the burning pain around the calf and the needling sensation in the knee area. I have also noticed much worse stiffness in the right leg in the mornings especially if I've had alcohol and have been feeling rather dehydrated. This seems to be more noticeable since starting SOD.
On second thoughts I think the SOD IS having quite a bit of an effect but at present it seems to be both calming the pain in my left leg and the phosphenes but increasing the stiffness in the right leg and a feeling of exhaustion from which I don't usually suffer. I continue with the antibiotics.

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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,

I am baffled by the SOD experience. My walking yesterday, admittedly after a quite heavy night of wine, was dreadful. Yet this enzyme is an antioxidant which inhibits superoxides and peroxynitrite production. However now I find that the epstein barr virus apparently causes one to produce auto antibodies to SOD! So the virus with most favoured MS cause status rears its ugly head again. <shortened url>

Maybe this is why people with MS have no SOD in their cerebro spinal fluid versus controls. Maybe this is why my walking feels worse and I feel more exhausted than I have ever experienced in my 4 years of diagnosed and disabled disease. Is the virus reactivating my auto antibodies to SOD? On the other hand the burning paresthesia in my left leg is sooo much better now. Very confusing. I'm going anti-viral again as the cause of this disease. I expect chlamydia pneumonia join in when they can as well but manifestly the antibiotics have not been enough to stop deteriorations so I think epstein barr has to be considered first in line. But how to kill it off? echinacea?
I'm also backing off the SOD and am taking now only 6x 250iu of glisodin.

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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,

G,

Sorry to hear you are having a bad time. There is a very interesting seminar taking place in May about EBV and MS. The seminar includes contributions from Professor Giovannoni from the UK and Dr Aloisi from Italy (who last year reported that her team had found EBV in the lesions of 22 out of 23 MS patients). Also contributing is Dr Ascherio who has done lots of research in this area. I think the seminar will include some discussion of potential therapies.

http://www.aini.it/files/allegati/Neuro ... ay2008.pdf

All the best

Ian

Thanks Ian, Giovannoni used to be my neurologist at Queen's Square. I wish they would stop yabbering and come up with some practical solutions to our disease! I'm now hunting for anti-viral herbs...Alex

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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,

The deterioration in my walking is now very pronounced and the stiffness around my left knee has returned. I started another round of flagyl yesterday so that may not have helped but I'm going to stop taking SOD altogether and see if this mini-relapse passes. Fingers crossed.

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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,

Am already feeling better after a day off the SOD, the antioxidant enzyme which is depleted in the MS cerebro spinal fluid. This article shows that we don't want free radical scavengers like sod for getting rid of viruses but we DO want glutathione - may start ramping up on this one soon!!! <shortened url>.
But this article suggests SODs is good in MS or EAE: <shortened url>.
In my experience SOD certainly DOES something but maybe we want more glutathione first.
This article suggests viral infections in selenium deficient mice results in more SOD production. Selenium is a precursor to glutathione so the selenium deficient mice maybe make up for no glutathione by making SOD. If the SOD and virus then caused the body to make autoantibodies to the SOD the mice would be without SOD too! Maybe this is what is happening in MS. Are we deficient in selenium? <shortened url>.
We are low in glutathione; <shortened url> and <shortened url>
Glutathione is a good anti-viral; http://www.ncbi.nlm.nih.gov/pubmed/8911579
<shortened url>
despite the worsening in my right leg motor function after a month of heavy SOD use I continue to enjoy spasm free nights and the phosphenes have been very quiet. I wonder if reducing the fibrin in my body via the fibinolytic enzymes actually helped. The spasms stopped before I started taking sod.

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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,

Alas, there can be no doubt I am now having a full-on relapse and am scheduled to have steroids in a week with those terrible 3 day drip feeds.

It is interesting that my last 2 relapses seem very strongly correlated with drug/supplement intake rather than merely the natural course of MS. For instance a relapse during the summer started after 73 days of continuous metronidazole and 21 hours of infrared sauna whilst the more recent relapse is strongly associated with superoxide dismutase (sod) usage. Clearly all these drugs have inflammatory effects and should be used with great caution. The latest relapse suggests to me either that epstein barr or some other virus is causing antibodies to the antioxidant superoxide dismutase to develop or that the byproduct of dismutation hydrogen peroxide was too abundant with the large doses of sod.
I am now looking into anti-viral herbs such as astralagus, shiitake etc to assist.

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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,

Oh Alex, I despair of you sometimes! Back near the tail end of '06, you had Giovannoni saying that you were doing so well that you should carry on with the antibiotics and whatever else you were taking http://tinyurl.com/2jtupz but now, not yet two months into '08,
and a few months before you plan to finish antibiotics you are like this. Maybe if you had just stuck to one of the regimes this would not have happened. I know you are impatient for complete recovery, but after the first exploit you should maybe have learned your lesson. Perhaps you will now.

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.

I have stuck to the antibiotic regime through thick and thin and continue to take them though haven't taken a pulse in a while. I went on continuous metronidazole because I had seen no improvements after 2+ years. Naturally after the relapse associated with metronidazole I realised that antibiotics alone weren't enough to arrest the disease process and started looking at other plausible treatments such as enzymes and antioxidants. Most health professionals consider antioxidants very positively so it seemed worth a shot and it's been very interesting to discover how counter-productive SOD has been. As it has revived my interest in viruses especially epstein-barr.

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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,

epstein barr is my old neurologist, Professor Giovannoni's favourite suspect in the cause of ms, <shortened url>

autoimmunity? <shortened url>

This report states that the compound dongxia wan is effective against ebv in vitro.
<shortened url>

some chinese medicine antioxidants
<shortened url>

It seems as though licorice is a good anti-viral as well as curcumin; <shortened url>, <shortened url>


Here's a link on licorice being effective against epstein barr in vitro:
<shortened url> AND http://wwww.aids.org/atn/a-017-01.html

Licorice seems good against herpes http://www.liebertonline.com/doi/abs/10 ... 005.11.131. I just had a coldsore develop so definitely have one of the herpes virii.

Curcumin is also effective against epstein barr:
http://www3.interscience.wiley.com/cgi- ... 7/ABSTRACT

Even better curcumin can block the epstein barr immortalization of B cells, which the rituxan trial results suggest are involved in the pathogenisis of lesions, in a dose dependent manner; <shortened url>

This article is very interesting in the context of my recent superoxide dismutase (SOD) induced relapse since the byproduct of SOD and reactive oxygen species is hydrogen peroxide which seems to assist EBV immortalization in B cells. Interesting interesting. I can't wait to get my curcumin and licorice supplements.


And vitamin E: <shortened url>


Maybe ganoderm lucidum (reishi)? <shortened url>

Maybe boswellia? Cancer chemopreventive effects and cytotoxic activities of the triterpene acids from the resin of Boswellia carteri.Akihisa T, Tabata K, Banno N, Tokuda H, Nishimura R, Nakamura Y, Kimura Y, Yasukawa K, Suzuki T.
College of Science and Technology, Nihon University, Tokyo, Japan. akihisa@chem.cst.nihon-u.ac.jp

Fifteen triterpene acids, viz., seven of the beta-boswellic acids (ursane-type) (1-7), two of the alpha-boswellic acids (oleanane-type) (8, 9), two of the lupeolic acids (lupane-type) (10, 11), and four of the tirucallane-type (12-14, 16), and two cembrane-type diterpenes (17, 18), isolated from the MeOH extract of the resin of Boswellia carteri (Burseraceae), together with a triterpene acid 15 (the acetyl derivative of 14), were examined for their inhibitory effects on the induction of Epstein-Barr virus early antigen (EBV-EA) by 12-O-tetradecanoylphorbol-13-acetate (TPA) in Raji cells and on activation of (+/-)-(E)-methyl-2[(E)-hydroxyimino]-5-nitro-6-methoxy-3-hexemide (NOR 1), a nitrogen oxide (NO) donor, and cytotoxic activities against three human neuroblastoma cell lines, IMR-32, NB-39, and SK-N-SH in vitro. On evaluation against the EBV-EA activation induced by TPA, seven compounds, 2, 10, 11, and 13-16, showed potent inhibitory effects on EBV-EA induction. Upon evaluation against activation of NOR 1, five compounds, 7, 13, and 14-16, showed potent inhibitory effects. Further, fifteen compounds, 1-7, 9-11, 13-15, 17, and 18, exhibited potent cytotoxic activities with IC(50) values of 4.1-82.4 muM against all of the three human neuroblastoma cells tested.

or:
<shortened url>

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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,

The more I read of Epstein Barr on pubmed the more viable it is that it is part of the MS equation. I am delighted to receive today maximised turmeric curcuminoids of 1000mg per pill. I somehow rather doubt that it is much more effective than standard turmeric but the marketing has worked!
I also received a combination of licorice, ginseng and shisandra which I bought for the high content of active ingredients in licorice. I don't know whether the latter 2 have anti-epstein-barr activity.
Finally I also received a combination of ganoderma lucidum and some of the other chinese mushrooms with anti-inflammatory activity.

<shortened url>
Wow, one day later and my leg is sooo much better and last night I had terrible spasms for the first time this year which indicates the medications were reaching through my damaged blood brain barrier. Good. I'm feeling really positive about this treatment too.

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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,

I'm very excited to be meeting in a fortnight an English trained chinese medicine specialist. We are going to discuss the research and herbs which I propose to take. This will include Dongxia wan, found to be effective against Epstein Barr in vitro. We are also going to discuss what NOT to take as many chinese medicines actually INDUCE epstein barr which explains the high prevalence of naso-pharyngeal cancer in Chinese populations - as epsein barr is the bogeyman (tee hee) there too.

<shortened url> and <shortened url>

I am taking a one week break from the antibiotics just to have a break. I still believe that antibiotics are partially useful in this disease but don't explain the whole story. I am now convinced that I must treat for Epstein Barr as well. Western anti-virals are pretty useless in this context so I am glad to be seeking guidance from the ancients.

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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,

I have completed 3 days of 1 gram of methylprednisolone which was initially rather bad for my leg but now my leg feels much much better. Long may it last.

Here's some information on magnolia which may be useful in autoimmune b cell mediated disease.

<PubMed Link>

My herbal strategy now consists of licorice, maximised curcuminoids and reishi. I have ordered some magnolia extract and meet with the chinese medicine practitioner next week. Hopefully I'll get more info on dongxia wan.

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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,

hopefully this will cure i mean help your condition

good job on no longer following a cult. (you know who you are)

I must say it is easy to fall into the trap of persuading oneself that something is working because one hopes that it is working. In this respect the antibiotic protocol may well have cult like aspects and I certainly was aware of this from time to time, no more so when it became apparent that I was not improving and in fact deteriorating. I still think that some people may have a bacterium that is the principal cause of their MS whilst unfortunately the majority have some kind of viral pathogenesis.

I met with my nice English-speaking Chinese medical practitioner who is going to put me in touch with another expert as she was a bit overwhelmed by all the research I printed out and also couldn't help identify Dongxia Wan which is effective against epstein barr in vitro.

In the meantime my regimen is now 3000mg of a serrapeptase, nattokinase combination, 2000mg of lumbrokinase, 4000mg licorice root, 3000mg ganoderma lucidum/reishi, 3000mg maximised curcuminoids, 3000mg max green tea extract, 600mg reserveratrol. Plus all the inosine, vit d, calcium, magnesium, vit e, b, alpha lipoic, nac, selenium, max. glutathione, red. glutathione etc from which I've never noticed any pronounced effect except NAC which made me sneeze a lot initially.

Last week I had 3 days of methylprednisolone 1g injections. Since starting the green tea extracts 3 days ago my walking improvements have accelerated though maybe this is just a lagged steroid effect. I managed 400 meters today without aid! Yippee.

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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,