This Is MS Multiple Sclerosis Community: Knowledge & Support

interesting, learn something everyday. i come from a cfs/me background not an MS so knowledge on MS isnt great, but i have read that inosine can help MS by increasing uric acid levels and thus antioxidant status(peroxynitrate scavenger?) which helps protects nerves. I dont have any links to this, but will do a search and see if i can find these articles. a google of inosine and uric acid should find something http://www.direct-ms.org/pdf/UricAcidMS ... AcidMS.pdf http://www.health-enz.com/products/inosine.shtml

Scott1 ebv seems to be a problem in MS similar to cfs/me, in cfs/me they find that they have poor natural killer cell function which is important in keeping these viruses supressed. Have you or do you know if MS patients show immune abnormalities like nk dysfunction?
interesting subject as i think these viruses are implicated in numerous illnesses.

cheers!!!

Hi heapsreal,

From my perspective I think there are a lot of similarities.
The progression of disease is difficult to determine when the cause and effect are so distant from from infection to symptom. A lot of genetic predispositions may influence the outcomes. The issues around EBV pop up in CFS, MS, a range of cancers and so on. The literature tends to be narrowly focussed on a tiny segment and is often repeated to the point that you can't establish who had the original idea.
What we do know is EBV does infect B cells, it does produce superoxide and consequently peroxynitrite. We do know that is highly disruptive. I have just assumed the signatures of that are found in Uric acid levels, the citric acid cycle, impaired ATP production and malfunctioning Vitamin D receptors. I'm sure there are many other signs that we simply don't recognise.
If you want to try my approach then you are choosing to attack EBV at the point of replication and looking for a positive outcome.
It would interesting to see what happens to a CFS affected person using the protocol I have suggested.

Regards

I came from CFS/ME background too. Glandular fever/mono but no lesions on brain for about 12 years with immense fatigue/muscle pain.
I went to see a guy called Demeilier (sp??) in Brussels and yes my NK cells were very low.
We tried antibiotics (ciprofloxin) and that got rid of the fatigue but symptoms like numbness marched on.
His next step was to offer me antivirals but it was too expensive for me to keep going back to him over in Brussels so didn't go with the next prescription. My MS got worse after a flu vaccine a year later and then I really knew the difference between MS and CFS. I had never experiences severe vertigo, weak limbs or vision loss before and then I was diagnosed officially with MS.

I feel for both of you.

Perhaps you could try what I have set out and share the experience. I did not get suddenly better but I did get a pick up in my cognitive skills almost immediately and through persistence I became well again. You don't have reinvent the wheel unless my approach doesn't work for you but I will try to provide some advice if you tell me how you are responding. I imagine we all have different starting points and influences on us that will create unique paths but if I am right and not just lucky then as you progress some similarities should emerge. We can compare experiences and explore differences. I won't pretend it's easy, particularly the Interferon, but at least you won't be just hunting around in the dark like I was.

Regards

I improved alot of famvir but my main virus causing me problems is cmv. After 12 months i was almost back to normal then i swapped to valtrex as it was cheaper, then i relapsed. Valtrex isnt a good fit for cmv. I went back on famvir and improved but not to the point i did previously, im now also using a small dose of a much stronger antiviral called valcyte which i feel is helping. I am not as bad as some as i can still work fulltime, my fulltime and part time status as changed a few times and really outside of work i have nothing left in the tank and have lots of symptoms like insomnia and nerve pains in my legs at night etc etc so still chasing after improvement.

LR1234 yes the belgium doctor is still on the cutting edge of cfs/me and has a few newer treatments but it is expensive like u say. I dont know if u can post sites to where u can buy cheap medications but i have found one good site that sells my antiviral i use, famvir, at a good price???

I wonder if MS for some is a progression of cfs/me for others the damage happens elsewhere. dr cheney a cfs dr from the US noted brain abnormalities in MRI's of cfs patients over 20 years ago. Another cfs doc has noted heart abnormalities from viral infections in cfs patients. I have also heard of others getting lupus etc as well as the more unusual cancers that scott1 mentioned. cfs/me research is leaning towards natural killers cells as a possible reason for this as well as using it as a possible diagnostic test for cfs/me http://www.translational-medicine.com/c ... 76-8-1.pdf

cheers!!!

Hi Heapsreal,

Famvir is a guanine analogue and by the look of it almost the same as acyclovir (Valtrex). Neither is the right thing for CMV, just EBV. You would be better discussing Ganciclovir with your doctor for CMV. Both EBV and CMV are gammaherpesviruses. They are closely related but different. I am IgG positive for EBV but not CMV.
Valcyte is used for CMV and it converts to Ganciclovir when ingested so I think you should continue. It has a half life of 4 hours. I have read of drugs being used to push CMV infected B cells from latent to lytic cycles and then attacking them with this product. Usually that's in cancer treatments.
This is where we start to peel the onion. Under every layer there will another one. I presume you have multiple infections. I would persist with the Valcyte but you should see if Interferon can be added to assault the latent cycle. I have always believed a single prong attack won't work. You need to get better 24 hour coverage so maybe you need to discuss with your doctor how best to do that. If you can make some headway by making these adjustments then we look again.
Either way stay in touch.

Regards

Hi scott1, a cfs/me forum i am mostly active on has others with hhv6 and myself with cmv had our viral titres lowered with famvir. Famvir isnt aknowledged to be effective against cmv or hhv6 or for that matter ebv its just been found effective through personal experience. I am now on valcyte which is a better oral absorbed med similar to ganciclovir as well as famvir. Another cfs patient had a doctor who was in close company with the makers of famvir and said it had a wider range of activity then approved for, apparently it would have been too costly to do further testing, they already had the testing done for oral, genital herpes and shingles, so i dont think they thought it would have been a big enough market to make money on getting approval for other indications like ebv/cmv/hhv6, so the rumors go, but many have had symptom improvement as well as viral markers improve on famvir for cmv/hhv6. in the cfs world famvir is seen as a middle of the road antiviral effective against most herpes virus, maybe not as strong as valcyte/ganciclovir but also not as toxic either and famvir can be taken for much longer periods.

I would like to use interferon but 99.9% of people with cfs/me wont get access to it. I do use an interferon inducer called cycloferon and this has been shown to improve my nk function in testing, http://portal1.democms.ru/resources/fil ... poules.pdf.
The problem with cfs/me is that even though immune dysfunction and chronic infection can be shown, the majority of health care systems around the world dont recognise it as such but class it as a form of depression. A common example of our situation is that before brain scans and other diagnostic procedures were developed for MS, sufferers were classed as having a depressive disorder, at the end of the day who wouldnt be but its only secondary from the initial condition and loss of your former self that can cause this. Now for cfs/me sufferers there is technology there to diagnose it but its more a battle of politics. There are some good doctors and researchers in the field but very few compared to other fields and also the research dollars are terribly low eg would be that the total budget In the US spent on me/cfs research from the govt i have recently read is $6m and when u read what sort of research they are doing there isnt alot being spent in proper research. Most illnesses have more money in one study then the entire 12 month budget on cfs/me research.

Sorry im having a whinge, just very frustrated by the lack of support or even recognition of cfs/me by main stream medicine, treatments used by us are all off label so many treatments we have to pay full price for, interferon would probably be to expensive for most as it wouldnt be subsidised at all for us. Most of us direct our treatments at what infections we have and try to improve our immune function the best we can as well as symptom type treatments etc for sleep, pain etc.

cheers!!!

Hi heapsreal,

Sorry I haven't responded sooner. I developed a shocking dose of gastro and I'm still struggling.
I understand your problem. A lot of CMV references refer to the lytic state so maybe Interferon is not so critical. I had a look throught a few articles on combination therapies and what struck me more than anything else is the frequency of your dosage doesn't seem to be enough.
Often the interesting articles are in the AIDS websites.
This one-
http://www.journalofclinicalvirology.co ... 7/abstract
suggests intravenous IgG as well as Ganciclovir.

Maybe you could discuss this with your doctor,

Regards

Another thing you could check is your CD4 level. CMV is controlled in AIDS by elevating the level. I'm sure how they do that. EBV works by evading the CD8 receptor on the Tcell. So the mechanism is different.
Regards

The lowest recommened dosing i have seen for cmv is one tab a day. My reasoning for using every second day is due to side effects and also hoping that taking famvir with it that it will also help keep viral load down that the valcyte causes. A study i read on organ transplant showed 1 450mg valcyte just as effective as the standard 900mg a day but with less side effects, i suppose its a work in progress and i will try and increase my dosage frequency as the side effects slow down, thats the plan anyway.

My cd t-cells have always been elevated above normal range especially cd8 t-cells which my doc says is due to cmv, these cd8 cells have come down with famvir but still not within normal range yet. cd4 has always varied between high and normal range. I think in hiv low cd4 is the reason for alot of viral reactivations, in cfs/me the theory is that these viral reactivations are caused by natural killer cell dysfunction, which i have. Interferon and interferon inducers are things that can help improve nk function.

One of the reasons i came snooping on an MS forum was to see how effective interferon was and to see how MS people are effected by viral infections and maybe pinch some info from you guys, lol. So far it has been interesting to see the correlation between ms and cfs, many theories overlap. Im finding some useful info.

cheers!!!

A week on from the worst gastro I can recall I have decided to return to the straight and narrow. I have already resumed Valtrex as soon as I began to recover but am now restarting Avonex after a holiday of nearly 2 months.
My biggest concern is that the Gastro may have been brought on by combining too much Q10, probenecid, Valtrex and retinoids all at once. I suspect I had a monster Herximer reaction but can't really prove it.
I'm now reverting to 2 Valtrex per day plus 150mg Q10 in the evening and a weekly Avonex injection. If it goes well then I will try the carrot juice again as I can see there are plenty of references if you google "RXR and bcl2" to suggest that 9 cis retinoic acid and all trans retinoic acid can have a positive effect on the pathway of EBV infection and its influence on the nuclear receptors. I think I'm on the right track here but worry I was just too aggresive by pushing the effective life of medication by using probenecid and paid the price. I'm still not troubled by MS but I have had a couple of little signs to say don't take chance so now I am back to the basic mix and I hope the gout doesn't kick in too soon or I will need the probenecid again.

I resumed Avonex and was surprised how well I tolerated it. There was no nasty flu symptoms at all. Unfortunately I had to stop the Valtrex due to gout symptoms starting to return. I've upped the Q10 to 2x 150mg in the evening and I have resumed a carrot juice in the morning. The carrot juice gives me 9 cis retinoic acid and that down regulates bcl2 which is the protein that binds EBV to the B cell. It seems a logical thing to do in the abscence of Valtrex and it appears to be working. I'll stay of the probenecid as the gout has now settled down.
I let you know how I am travelling in a few weeks. I certainly feel fine at the moment.

Regards

Hi Scott, I have been looking into L-Valine as a replacement for Valtrex any thoughts on this?
I have ordered some inosine too as I don't think I can change to Avonex and valtrex just yet.
Trying to see if these two supps plus some strong antioxidents might help.
I can't get my head round the Valtrex L-Valine connection and you are obviously able to understand this stuff better than me so I thought I would ask.

I have ordered a mixture from Lamberts called Branched chained amino acids BCAA it has L-valine...I just have to make sure the other 2 amino acids are not a problem....They can be toxic if not broken down by the body well and need Biotin to be broken down. I thin I will take a small dose only to make sure I get the minimum to see if that does anything.

Sorry to hear about your gout.....hope you feel better in general soon x

Hi LR1234,

I didn't quite see the connection you were alluding to at first then I realised that Valtrex as a tablet is in the form called Valacyclovir. When ingested it is broken down into L-Valine and Acyclovir. It's the Acyclovir that I'm interested in as that is the substance that has the guanine base that termininates the RNA of the EBV and stops it replicating. The way I look at it I'm not expecting the L-Valine to help. L-Valine is an essential amino acid which means you need to ingest it as you don't make it. The amino acids I find interesting are the non-essential ones because we are supposed to make them ourselves and if our levels are low then it implies a normal process has gone awry. My understanding is the peroxynitrite, made by EBV infected B cells coming into contact with naturally occuring Nitric Oxide, ultimately disrupts the citric acid cycle and that results in low levels of nonessential amino acids, low ATP and certain nuclear receptors (RXRVDR complex) being inactivated. L-Valine doesn't really play a part it's just a byproduct of the Valtrex tablet breaking down when ingested.
L-Valine and Inosine are both branch chain amino acids but I can't work out how they may help precisely.
Have a read in Google about BCL2. That protein is the key to EBV binding to B cells. Because I am struggling with high uric acid causing gout I have tried increasing my intake of retinoids via Carrot juice as the EBV don't handle all trans retinoic acid well you can activate the RXR receptor with 9 cis retinoic acid. RXR is the master switch for the Vitamin D receptor. I'm finding a glass a day quite benficial. L-Valine sounds more useful if you want to repair muscle after excercise.

Regards

Thanks for looking into it for me Scott!

So the L Valine is just a by product of the break down of valaciclover mmmm not much of a help then!

So its important for us to make enough non essential AA's ourselves and enough ATP but the viruses negatively affect this....I can see why its all so complicated!