This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi LR1234,

Basically, yes. That's it.

Coenzyme Q10 can help restore ATP a bit but basically I am trying to disrupt the EBV replication as that is at the core of it all. Valtrex will only work on the lytic cycle of EBV replication and Interferon will only work on the Latent cycle. That's why I used both. Gout from the elevated purine in Valtrex has been my only problem after long term use. My current work around is to use Avonex, Q10 and carrot juice. The retinoids in the carrot juice are a safe delivery path path and I seem to have some success doing this. I wish I could add the Valtrex back in but the gout is an issue. Nonetheless I'm staying well and the slow train is acceptable to me in my current state.
Try being tested for Uric acid levels, non essential amino acid levels and Vitamin D levels. If they are all low, the Valtrex and Avonex (or rebif) are a good place to start. It will take a long time before gout becomes an issue and at least you can get your uric acid levels rechecked and monitor so you can adjust. I din't know this and found out the hard way.

Regards

Hi

For the very academically minded this might be interesting. It is some work looking at how EBV borrows from the host to hide from the immune system. The easy version is here-

http://www.newswise.com/articles/micror ... -formation

and the very complex version is here-

http://www.jbc.org/content/285/43/33358.full.pdf+html

The point is there is a mechanism at work that can be demonstrated and a target is identified. (there's obviously a long way to go)

In the complex article they explain how adenosine is mistaken for guanosine. This tends to support using Valtrex as a disruptor of EBV replication by introducing guanine to create a stop in the RNA sequence. In other words, using Valtrex makes sense if you believe the involvement of EBV is important in sorting out a treatment protocol for MS.

I'm still very well. Currently using Avonex, Valtrex, Carrot Juice, Coenzyme Q10 and I'm also finding the active ingedient in Olive leaf extract (Oleuropein) is of benefit. There's plenty on this if you google it.
I think it's a good thing to take on many levels not just for EBV.
If anybody has done some good work on Nuclear receptors I think it will make interesting reading. Some of them are activated by Retinoids (my carrot juice line) and Oleuropein and think we will find this a worthwhile field to explore.

Regards

This is a good article on Peroxynitrite.

EBV infected B cells supply the superoxide

http://www.enzim.hu/~lbarna/articles/17667957.pdf

Regards

Hi Scott1,

We have been following your advice, to good effect, since Daylesford - thank you very much
We did have the first gout flare-up just recently (only minor) and with a little fiddling found that more regular flax-seed oil intake has helped balance it out (so far).
I am wondering if you have looked into any uricosuric agents as a way of balancing the gout issue?
Having looked at "Roselle - Hibiscus sabdariffa" I have been thinking that it could be added to the carrot juice or perhaps herbal tea?

cheers, mike

Hi Mike,

Love "gripper"- what a name!

I've found the Olive leaf extract really useful. All the joint pain cleared up and I'm back on Valtrex without an issue.
The active ingredient is Oleuropein. I'm just doing Avonex weekly, Valtrex twice daily, 300mg Q10 just before bed, a big carrot juice on the way to work and a good swig of Olive leaf extract after I clean my teeth in the morning.
If it interests you start looking up the thyroid like nuclear receptors. The key ones seem to be RXR (that's why I have carrot juice and PPAR ( the olive extract). When I've gone long enough, which might take a year, I'll get my vit D rechecked. The Vit D receptor can't work if RXR doesn't. PPAR controls a whole range of functions so again it will take some time to know if I've made a difference but I do know I feel really well and very alert.
Regarding uricosuric agents -
I did try the traditional mix of probenecid, Allopurinoll and Colchinine but that wasn't a great result. The Allopurinol contraindicated with the Valtrex and the probenecid extends the life of medications which makes the dosage more difficult to determine. The Olive leaf extract seems to work better.

Regards

thanks, will look to get some olive leaf extract asap.
Tan is taking one valtrex and 150mg Q10 which she says is about the right levels for her, plus the carrot juice and flax-seed oil.

cheers

Hi again,

I thought she was taking rebif as well. How did that turn out?

Regards

Hi Again,

I've added one more thing to my daily routine but its taken me a while to decide that I should mention it as everything I do is based on quite heavy research published in high end medical publications and this is based on anecdotal information, albeit there are numeous references if you google it.
My thinking goes along these lines; firstly, I have had great success doing what I do already and the primary aim is to disrupt EBV replication and the production of peroxynitrite. The second aim is to restart the normal functioning of nuclear receptors that have been disabled by peroxynitrite.
Others have mentioned quite interesting and valid observations about overproduction of homocysteine and underutilisation of zinc in particular but I always end up following a path of questioning that takes me back to the EBV/peroxynitrite poisoning level.
Bearing that in mind, I found the links by Annesse and Caveman led me off on a tangent where I thought about our PH levels. There appears to be little consensus about what the individual who came up with that term meant it to stand for but many acept it to mean "potential hydrogen". I followed many anecodatal links focussing on increasing alkalinity as a treatment for cancer, a treatment for gout, as an antiviral and as an antibiotic approach. The usual treatment was to use Bicarbonate of Soda diluted in water as a drink but the extreme end used it intravenously.
I was a bit troubled by the lack supportive high end medical research but its supporters quite reasonably point out that a drug company is not going to pay for research into a cheap product from a super market shelf that they can't patent.
Ultimately, I decided to give it a go. I have a level teaspoon in the morning in a long glass of water and another in the evening. A heaped teaspoon resulted in rapid, explosive pyrotechnics in the toilet so you can have too much of a good thing.
The inital effect was it made my stomach feel much more comfortable which has been a long term issue that I have just got used to. The second effect was a thumping headache developed for about a week. The third effect was the most interesting; I developed a strong stinging sensation in the joints in my lower legs and feet and pain in the backs of my hands for around about a fortnight. As best as I can tell I was experiencing the effect of the crystals that cause my gout dissolving and its cleared up completely now.
The anecdotal links I found by googling argue that the EBV capsid cannot remain intact in an alkaline environment. I suspect the headache was caused by the breakdown of EBV as I assaulted it with the bicarb.
The Olive leaf extract made the pain as the crystals dissolve go away very quickly. I have become a very big fan of this stuff and have almost lost track of the number of people who say I look so well. (Clearly I either didn't before and just thought I was getting old or I do just look better). Generally they comment on my skin colour and say I have lost weight. It must have been gradual as I didn't notice.
So now I do everything I was doing before but have added a level teaspoon of bicarbonate of soda morning and evening. I think it helps.

Regards

That may be true, but people are still researching and publishing on bicarb.

Bicarbonate Increases Tumor pH and Inhibits Spontaneous Metastases.
Cancer Res. 2009 Mar 15;69(6):2260-8.

The external pH of solid tumors is acidic as a consequence of increased metabolism of glucose and poor perfusion. Acid pH has been shown to stimulate tumor cell invasion and metastasis in vitro and in cells before tail vein injection in vivo. The present study investigates whether inhibition of this tumor acidity will reduce the incidence of in vivo metastases. Here, we show that oral NaHCO₃ selectively increased the pH of tumors and reduced the formation of spontaneous metastases in mouse models of metastatic breast cancer. This treatment regimen was shown to significantly increase the extracellular pH, but not the intracellular pH, of tumors by ³¹P magnetic resonance spectroscopy and the export of acid from growing tumors by fluorescence microscopy of tumors grown in window chambers. NaHCO₃ therapy also reduced the rate of lymph node involvement, yet did not affect the levels of circulating tumor cells, suggesting that reduced organ metastases were not due to increased intravasation. In contrast, NaHCO₃ therapy significantly reduced the formation of hepatic metastases following intrasplenic injection, suggesting that it did inhibit extravasation and colonization. In tail vein injections of alternative cancer models, bicarbonate had mixed results, inhibiting the formation of metastases from PC3M prostate cancer cells, but not those of B16 melanoma. Although the mechanism of this therapy is not known with certainty, low pH was shown to increase the release of active cathepsin B, an important matrix remodeling protease.

The full paper is available for free.

Yes,

I saw that cancer stuff but the sort of stuff that prompted me to give it a go looks more anecdotal. There is an Italian doctor who claims success using a toffee made of molasses and bicarb but I couldn't find a hard edge of research to support it.

Regards