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I couldn't discern any obvious side effects from the valacyclovir. Although goodness knows what curious internal effects occurred after ingesting such a large blue pill!

Hi,

Ian, before I forget, I just wanted to mention how stupid it was for me to say that I was thinking that my daughter's early exposure to EBV might protect her from MS. I mean, early exposure was what you said you had

But, will still try to maintain my hope for her

gibbedlygook,

Sure appreciate you sharing your experiences, both with anti-virals and antibiotics. I found your thread in the Regimen Module. Wow!

I wish my labs had come back positive for chlamydia, or some other infection, instead of stupid EBV. Then, maybe, I'd have more hope for treatments.

CureorBust,

Here is a link I found when I did a quick Google search before bed, last night:

http://web.uct.ac.za/depts/mmi/jmoodie/antivir2.html

Seems to explain things in layman's terms to me, rather well. And raises many questions:

"The alpha and beta Interferons
are cytokines which are secreted by virus infected cells.
They bind to specific receptors on adjacent cells and protect them from infection by viruses.
They form part of the immediate protective host response to invasion by viruses.
In addition to these direct antiviral effects, alpha and beta interferon also enhance the expression of class I and class II MHC molecules on the surface of infected cells, in this way, enhancing the presentation of viral antigens to specific immune cells. Their presence can be demonstrated in body fluids during the acute phase of virus infection."

OK, so if Interferons are only effective before a virus invades, how can Betaseron help, AFTER viral invasion

This was the question that I fell asleep with, last night, and one I'd like to find time to study, today.

Lots to do

Minai

Minai,

On the issue of your daughter - try not to worry too much. She is unlikely to develop MS (statistically speaking) and the next five years will see big breakthroughs and much better treatments (I'm a natural pessimist but still believe this).

In terms of EBV - it may well be a trigger / cause of MS in some - but this has yet to be proved. The important thing is for the researchers to develop much better therapies for stopping any further damage and for repairing established damage. Lots and lots of work is going on in these areas. One of the top UK MS researchers thinks the following (and his views are shared by many others):

In the next few years, research in several promising areas is likely to bear fruit, especially:

- an improved understanding of how best to apply treatments that modify the immune response and to limit the effects of MS,

- the implementation of neuroprotective strategies, including the MS Society’s trial of lamotrigine, to prevent disability from occurring, and

- progress on how to repair the damaged nervous system in MS to help with recovery from established disability.

It's frustrating that we seem so near, but better times are getting nearer.

Ian

Ian

I never thought you'd utter

better times are getting nearer

I truly believe they are as well.

For you and Minai--here's some info suggesting minocycline might be an anti-viral agent. Of course, the studies aren't on EBV but I thought I'd post them anyway. Here’s an abstract on Minocycline and HIV activity in Macaques.

CONCLUSIONS: In this experimental SIV model of HIV CNS disease, minocycline reduced the severity of encephalitis, suppressed viral load in the brain, and decreased the expression of CNS inflammatory markers. In vitro, minocycline inhibited SIV and HIV replication. These findings suggest that minocycline, a safe, inexpensive, and readily available antibiotic should be investigated as an anti-HIV therapeutic.

Here's another one-- Minocycline delays disease onset and mortality in reovirus encephalitis

Experimental infection of neonatal mice with neurotropic reoviruses is a classic model for studying the pathogenesis of viral encephalitis.

These findings, similar to those reported for neurodegenerative diseases, indicate that minocycline does not prevent development of fatal reovirus encephalitis but delays disease onset and progression, suggesting that minocycline treatment may provide a useful adjunctive therapy in viral CNS infections.

Minai--Ian posted some info on minocycline in the drug regimens thread too you might want to take a look at. It is in clinical trials with copaxone.

Take care

Sharon

Ian, thanks, I really do try not to worry too much about my daughter and her chances. It's just very difficult having met several people in other forums whose children and/or sisters, brothers and/or parents have all been diagnosed, too. It just doesn't seem to match the stats

And I really hope your faith in possible breakthroughs is rewarded. It certainly is apparent to me that you have done much more thorough research for much longer, than I. Thus, more upon which you can base such faith. All that you share, here, is certainly helping with that. Today, I was able to find some time to read more S. Haar's articles from PubMed and can certainly understand (well, maybe not fully, yet) why that researcher told you that it was on the cutting edge.

Yes, maybe...better times for treatments, therapies, preventions, but probably not cures--especially if MS really is caused and/or triggered, virally.

Minai (who sometimes has trouble replacing pessimism with objectivism)

Hi Sharon,

Thanks for that. will certainly take a look at the minocycline info, as well.

The alternative medical doctor that I see, and whom I persuaded to order all of the lab tests I wanted to have done, called me, this evening. He didn't realize that I had picked up the results from his office, before he even got the chance to read them, himself

We discussed what direction I'd like to head. And I shared, a little, of what I have been referred to studying, here. So, until I decide on an anti-viral, or even if I want to start an anti-viral; he wants me to take an herbal concoction in capsules. Starting off slowly with it, but increasing it to aggressive levels. He takes it himself to ward off viruses. And since he seems to be so healthy (he used to be one of Reebok's professional track runners) I told him I'd try it, but only after I looked it up to see what it has in it.

So, I did. And it looks safe enough, so in the meantime, I will try it.

He was also worried about my anemia. He thinks it might be pernicious because the blood cell volume is so high. Well, have always been slightly anemic, and B-12 deficiency was the first thing that I was tested for when ruling out MS. And, then again, by other doctors, but the cell volume didn't worry them.

But, since viruses are anaerobes, maybe this anemia created just the environment the EBV needed to thrive

Didn't think of this, while on the phone with him, but it's definitely the next question I will ask him.

Sorry, didn't intend to carry on so much in this response to you, Sharon

Thanks, again!

Minai

Minai wrote:he wants me to take an herbal concoction in capsules. Starting off slowly with it, but increasing it to aggressive levels. He takes it himself to ward off viruses ... I told him I'd try it, but only after I looked it up to see what it has in it

What is it called? and what IS in it?

Minai wrote:But, since viruses are anaerobes, maybe this anemia created just the environment the EBV needed to thrive

I'm not sure I understand what you mean by the above statement. When I think of viruses, I don't think of them in aerobic vs. anaerobic terms. Virus are essentially molecular parasites. In simplified terms, they are some nucleic acid, either DNA or RNA, surrounded by a protein coat which provides a structure as a nucleic acid container as well as a way to more easily enter a cell. Once inside the cell, the virus releases its nucleic acid which can then incorporate into the host cell's genetic instructions. The viral nucleic acid then overtakes the host cell's protein production machinery, i.e., ribosomes, and instructs the cell to make copies of the viral proteins instead of the host cell's native proteins. The host cell then fills with viral particles which then bursts releasing more viruses to infect more cells. Viruses aren't really alive in the true sense of the word. Thus, I think of them neither as aerobic or anaerobic.

NHE

Hi CureorBust,

I deliberately didn't name the supplement because I don't think I should advertise it, Doctor-recommended, or not

Will PM the URL to you.

It probably isn't even something that I would have glanced twice at, had I happened to find it, on my own, either. But, since, this doctor claims it might help and wants to monitor me while on it. I suppose I'll try one bottle of it, but being the skeptic that I am about such things; my expectations are low


Minai

NHE,

Yes, I do think you're correct. Since viruses can't breathe on their own, they really can't be anaerobes, on their own, either. I earned a Biology Degree, years ago, that I haven't even used until now. Can you tell

Often times, I think that the little bit of knowledge that I retained from it, proves dangerous for me

As in, am now wondering if anaerobic bacteria host viruses, about bacteriophages, etc.

Minai

Minai wrote:Will PM the URL to you.

Thanks.

Minai wrote:but being the skeptic that I am about such things; my expectations are low

Personally, i think thik is the best way. If you get an improvement, its a bonus. I will be waiting to see your results, either way.

Although, just once i would love to get some placebo effect...

Hi CureorBust,

Well, I sure hope that this doc is not playing the placebo game, at $40 USD/bottle. I suppose he does "deserve" something for writing orders for all of the lab tests that I wanted (knowing that my family doctor and neurologist wouldn't write them all, I'm sure).

What I really do not like about it, is that there are no quantities listed for the ingredients. I mean, what if someone took it, who was taking some of those ingredients as supplements? I'm not, but if I were, I'd fear overdose.

Will go tomorrow to purchase it, and maybe ask him these things, before (if)I do.

Minai

Hi all

Found this in my files. Estradiol is required for a proper immune response to bacterial and viral pathogens in the female brain

This defective innate immune response was also associated with a widespread viral replication and neurodegeneration....

These data provide evidence that interaction of E(2) with their nuclear ERalpha plays a critical role in the control of cytokines involved in the transfer from the innate to adaptive immunity. mice lacking E(2), ... allows pathogens to hide from immune surveillance and exacerbates neuronal damages during viral encephalitis.

I emphasized the "viral" first because it's a "viral" thread, but estradiol also seemed to protect against LPS endotoxin. I think (but am not certain) that's an endotoxin of concern with cpn.

E(2) replacement therapy totally rescued the ability of the endotoxin to trigger microglial cells and these permissive effects of E(2) are mediated via the estrogen receptor (ER)alpha.

Estradiol is a form of estrogen present in both men and women and it's the ER alpha receptor that seems to be of benefit in EAE trials.

Just another reason to think about balanced hormone levels.

Sharon

Thanks for the Estradiol info, Sharon!

Just another reason to think about balanced hormone levels.

The hormonal factors, and viral protection, are not even something I had even considered studying.

When first diagnosed, however, I was using Estriol (pregnancy hormone, different than Estradiol, I know) cream. Simply because I had learned about remission during pregnancy. During the week before my MP started, when hormone levels drop; symptoms would get worse, so that's when I used it. It did seem to help. And, then, when my cycle started (Estrogen started to pick up); the symptoms would decrease significantly. Yet, I stopped using it, when I went into remission. Since this latest relapse, I thought about starting it again; but didn't.

In consideration of possible viral protection, however; maybe I should. But, I'd really like to learn more before I do. Your info is certainly a great starting point!

Currently, since relapse, I still have the symptoms creeping up, insidiously, without even realizing it; but getting worse on the first day and only better when menstruation ceases.

Thanks again!

Minai








[/quote]

Hi CureOrBust,

Just visited the Alternative doc, again, so have an update.

CureOrBust wrote:

Minai wrote:Will PM the URL to you.

Thanks.

I will provide one or two links to products, here, this time, too.

First, a little more background on this doctor and his practice...

His office is always full. Many MS patients. But, many young children with Autism. He believes that both MS and Autism are caused by Lyme Disease. And, of course, I live in one of the Lyme Disease capitols of the world, so, he sure has the market available to him.

After this last visit, I am truly convinced of his sincerity and not wanting to take advantage of anyone. But, am just not certain his treatments actually do work. This is what he recommends for me:

1. 10 consecutive days of hyperbaric O2 treatments
2. Samento (Cat's Claw) Tincture
3. B-12 Methylcobalamin Injections
4. A product called Heavy Detox
5. Engystol
6. Colostrum
7. The Seasonal Rescue product (that I sent you the URL for)

CureOrBust wrote:

Minai wrote:but being the skeptic that I am about such things; my expectations are low

CureOrBust wrote:Personally, i think thik is the best way. If you get an improvement, its a bonus. I will be waiting to see your results, either way.

Although, just once i would love to get some placebo effect...

When I asked him to justify hyperbaric O2 treatments, he said that it would help lesions heal, ward off anaerobes, and help my anemia. Am open to this possibility. He also claims that it is a popular MS treatment in the UK. Not according to any of the searches I've done here, it isn't.

As far as B12 injections for my anemia goes; I test within mid-low normal ranges, but he does not accept the conventional standards. Another alternative doc, that I've consulted with over the past two years warns against high doses of B12. Because methylated or not, he claims that non-organic toxins that may be present in the body, get methylated into, 100 times more toxic, organic forms. So I told him, no on B12 injections. And, that I would just start taking the liquid chlorophyll, that my nurse-midwife's nutritionist had recommended, years ago. It had seemed to work, as it brought my lab values up high enough for what was required for the homebirth.

Have not agreed to taking any of the supplements he recommends, except the Samento. He claims that it will help prevent more viral replication of the EBV:

<shortened url>


Only one drop a day in a glass of water. Because he warns me that I'll herx from it, if I don't go slow with increasing the dosage. I will research some of those other supplements, tho. Maybe even try to find more suggestions on hyperbaric O2, as well.

Oh, and this doctor does not recommend antibiotic treatment, either. As usual, am left with lots more questions and few answers

Am just glad I get some partial insurance reimbursement for this alternative doctor, while I continuously attempt to figure out what to do.

Minai