Re: MS and HHV 6

Posted By Linda on April 16, 1999 at 09:16:10
I would like your opinion on MS and HHV  6.  Are you using any of the anti virals to treat MS patients that I have been reading so much about.  I understand they are really helping with their symptons.

[CCF Neuro MD msf]

Posted By CCF Neuro MD msf on April 16, 1999 at 13:47:07
Dear Linda,
Thank you for your question, which has been a "hot topic" for MS patients this year. We are not using routinely antiviral treatments in MS. The idea that MS could be caused by a virus has been an area of research for many years. Despite some promising results, none of the numerous viruses investigated has been identified as the cause of MS. The most recently discussed, HHV6, is a widespread virus. A majority of people have been exposed to it, and have antibodies against it, although they don't have MS. We don't think there is enough evidence to link directly HHV6 to MS, except in some exceptional cases. And even if a virus could trigger MS, we think that, most likely, the virus is not present any more at the time MS is diagnosed. For this reason, until further evidence is provided, we don't think antiviral medications, which are potentially toxic, should be routinely used in MS. This is in summary the answer we have been giving to our patients when they asked us the same question. I hope you will find this helpful. Of course, the whole MS community is working hard to find a cure to this disease.

[edward-hil]

Posted By edward hill on June 23, 1999 at 22:48:16
hi folks
linda's question seems to be in regard to the efficacy of antivirals in MS. unless i'm mistaken, it's entirely possible for these drugs (valtrex, gancyclovir et al) to be helpful whether or not viruses have a causal relationship to the disease. it's important to make that distinction.
also the doc seems to be referring to the varient of HHV-6 that shows up as childhood "roseola". a mosre aggressive varient is present in 80% of MS patients. see valtrex study done at rockafeller i'm not sure she's published yet but will soon. a far smaller cohort among the general public shows up posative for antibodies to this bug.
so i have to differ with you doc. HHV-6 is most certainly present in most MS patients during attacks.
for reasons too lengthy to address here, i do agree that it probably doesn't play a causal role in the disease.
in the case of gancyclovir i agree that the drug is potentially quite toxic. but discounting the potential help this drug has to offer for that reason would also mean that solumedrol shouldn't be used. the glucocortical steroids are preferentialy bound by glucose receptors in the hippocampus and amigdala. while these receptors are so occupied they can't bind the glucose they need for nourishment. memory among other things requires a lot of energy. the dendrites and eventually the axons involved are starved. if this goes on long enough those cells die resulting in loss of conversational and "short term" memory. it may well be that the typical 5 day bolus treatment followed by several days taper contribute to the early cognitive difficulties common to MS patients.
it may also be true that steroid treatment without antivitral and antibiotic prophylaxis allows pathogens to spread through the CNS.  with all due respect to you doc, if bystander damage is actually triggering some of the autoimmune damage that we experience then it is clearly irresponsable to omit such prophylaxis.
it may be that the causal factors in MS have little to do with the episodic triggers we as patients experience in the ongoing course of disease progression.
i strongly suspest this to be the case. the epidemiology of MS seems to argue against a pathogen being the culprit. assuming there is a "the" culprit.
linda, keep looking! there are folks being helped by the use of antivirals as well as some for whom they are ineffective. there is a message board set up by and for those using IV ganciclovir at
http://www.InsideTheWeb.com/messageboard/mbs.cgi?acct=mb423000&TL=
and you might try alt.support.mult-sclerosis on the usenet. where there are some pretty lively and sometimes contentious discussions on the subject. it's a bit of darwin meets information dispersal.
if anyone's interested i can and will happily document everything i've said here. just e me.
best wishes
ed      ***@****











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