Anti- Virals and Ataxia?


So I am wondering if anyone has any information/ experience with this. I am still in the process of being tested for various causes of my sypmtoms of cerebllar ataxia.

My Dr. has tested for a variety of viruses that can cause post-viral complications.

One test he just got back showed high numbers for HHV-6. Apparently HHV-6 is something that almost everyone gets as an infant or small child as a mild illness. Sometimes as Roseola, which has a rash. - I am a little concerned about the possibility that the HHV-6 in my system is very recent, as my infant grandson recently had a virus that caused a similar rash, and I was around him at tht time, a week or two prior to my blood test. The cerebllar ataxic symptoms have been going on much longer than that.

Rarely in adults it can re-activate, or be accquired for the first time, and cause symptoms like chronic fatigue syndrome , looking on line I found a couple cases where possibly reactivation in an adult caused ataxia type problems. This seems to be incredibly rare, especially if the person is other wise not immunocompromised through aids or an organ transplant. They are also researching the role of HHV-6 in MS.

My Dr. wants to have me try Valcyte, a strong anti-vrial medication. I am more than willing to try anything that might help, although Valcyte has strong side effects that do concern me.

Does anyone have any feedback on ant-virals for ataxia symptoms that may be caused by a post-viral reaction ?

Thanks so much for any feedback !

Hi Oblidioblida,

i am taking Valcyte = Valaciclovir regularly since 4 years. I have had a herpes zoster infection and i am immunocompromised after stem cell transplantation for leukemia - and so i have to take Valaciclovir as disease prevention.Valaciclovir is said to be mild, and i never have experienced side effects.

Kind regards, Akita

Why not give it a try?

Thank you, that is very encouraging ! I intend to try it, I am mostly concerned because some of the side effects listed are pretty severe.

Do you know if your ataxia is related to this ?


Valcyte is not identical with Valtex=Valaciclovir,which i take in.

Controlling my posting i found an information leaflet warning against the confusion of the two medications: in

Letter to the Editor | Published 17 July 2012, doi:10.4414/smw.2012.13639

Cite this as: Swiss Med Wkly. 2012;142:w13639

Confusion between valGANciclovir (Valcyte®) and vALAcyclovir (Valtrex®)

Laure-Zoé Kaestlia, Caroline Fonzo-Christea, Pascal Bonnabrya, Klara M. Posfay-Barbeb
a Pharmacy, University Hospitals of Geneva (HUG), Switzerland
b Infectious Diseases Consultation, General Paediatrics Department, University Hospitals of Geneva (HUG), Switzerland

Your doctor might have confused the two medications. Or has this been your error? Did he want to prescribe Valtex to you?

No, I am sure he prescribed Valcyte, I had him spell it so I could look it up, and he wanted me to look into it because he said it is very expensive if insurance won't cover it ( fortunately mine does ), and that there can be a lot of side effects.

Thank you for researching that though !

More information about HHV-6 probably causing your ataxia can be found in the Handbook of Clinical Neurology 103, from 2012, Chapter 7

This chapter has to be bought separately for $ 31,50, or as the whole Handbook (for more than 200 $ on and similar book providers), Supposedly your doctor will have it already. But i think it would be helpful also for the informed patient with many chapters regarding Ataxian Disorders. It provides much information about the diagnosing and treating, including studies.

As non-specialist, non medician i could only suggest that you would try to go for a second opinion to an specialized ambulance, preferably in an university clinic. There is not only a neurological, but also a infectiological problem to solve.

Without the necessary clinical experience it seems impossible to say if Valcyte would be the best solution for you to do next. Normally all neurologist have got the clinical formation and connections.

In "my" Handbook-Paper Version, which i have borrowed from our university library there are a lot of infections indicated which can cause ataxia; amongst them:

Herpes simplex virus type1

Human herpes virus-6

Varicella and


HHV-6 caused ataxia seems very rare, following table 7.3. of this book chapter, but it could be that your HHV-6 positivity in the blood could be the sign of a HHV process having been established even before your grandson had his childhood-disease.. No idea.. Your doctor should be able to give a rationale and patients information for his actual treatment recommentation, because your disease has been undoubtedly existing much more earlier than the onset of the disease of your grandchild..

Two articles are given as further literature for reports about HHV-6 as causes for "cerebellitis" in the subchapter "Ataxias":

These are:

Kato 2003, Acute cerebellitis in primary human herpesvirus-6 infection. Euro J Pediatr 162: 801-803 and
Borghi et al 2005, Detection of herpesvirus-6A in a case of subacute cerebellitis, and myoclonic dystonia J Med Virol 75, 427-429

In the first case a little girl experienced an acute sickness, treated with aciclovir, and it is noticed, that valcyte would have been the primarily indicated medication, but not given to her because of the side effects. aciclovir then was successful.

In the second case a little girl became sick for three times, and then there where further laboratory-investigations done for which would have been the cause of her cerebellitis, leading to the result, that different versions of HHV-6 could have played a role and even an underlying varicella infection..

And you are right in reporting that there is actual research on HHV-6 and MS; there is much research on HHV-6, but nothing from it i could find in the Handbook.

It seems complicated. Surely your doctor has got more information about actual diagnostics for Ataxia and treatments than we all can get. Hopefully he has foulnd actually the right treatment for you.

Kind regards,


Wow ! Thank you so much for all your research ! I really appreciate it.

I am going to give the Valcyte a try, even though I am a little concerned about the probability of this being the cause of my problems. It seems almost impossible that I could have a primary case of HHV-6 since it is nearly universal, passed among infants/ small children and I not only raised a large family, but was a day care provider - so avoiding infection until now seems almost impossible - and if it is a recent infection the most likely time I got it would have been when my infant grandson seems to have recently been ill.

And in the cases I am finding regarding re-activation ( which does seem very possible, given recent stressful events ) - the symptoms are more like Chronic Fatigue and Firbromyalgia - which I could see, but not like Ataxia. Since I was experiencing extremely debilitating exhaustion , brain fog and bone pain before the Ataxia became a serious issue i am hoping that if nothing else, maybe the Valcyte will help with those symptoms.

.. whatever i have tried to search for others,- in most times this pays for me personnally and has safed me. For me alone i never i would sit on a Saturday afternoon, reading in studies. i would suffer very much from this, and i would give up. It s always more comfortable for the soul (- the not fully"awakened"soul like mine-) to do things for others, as to have to confess: These are just my problems, so - try to work to solve them...i would feel morically be forced..

You write about having read about HHV-6 reactivation and fatigue, fibromyalgia? You searched by pubmed search? So i. i also could not find such reports dealing with ataxia. This could be because no neurologist or clinic has had such a patient within the last years. Such cases are seemingly very seldom ones. Or rarely found out...(?)

Here there are more details of the list in Table 7.3. "Infectious agents associated with cerebellitis"

Only for the four abovementioned virusses:

Agents Frequency References

Herpes simplex

virus type 1 Rare Ciardi et al., 2003

Human herpes

virus-6 Uncommon (!) see above

Varicella Common Ziebold, 2001

Varicella-zoster Common Boughton, 1966, Montenegro et al., 2002

In these studies/reports it has been reported that Cerebellitis (i think this can be associated with Ataxia) has been found out having been caused by HHV-1, HHV-2, Varicella, Varicella-Zoster

To find these studies, i go first to the references on Chapter 7 of the Handbook:

These are:

Ciardi M. Giacchetti G. Fedele CG et al. (2003). Acute cerebillltis caused by herpes simplex virus type 1. Clin Infect Dis 36: e50 - e54

Ziebold C, von Kries R, Lang R et al. (2001) Severe complications of varicella in previously healthy children in Germany: a 1-year survey. Pediatrics 108: E79

Bouthton CR (1966), Varicella-zoster in Sydney; II. Neurological complcations of varicella. Med J. Aust 2; 444-447

Montenegro MA, Santos SL, Li LM et al. (2002), Neuroimaging of acute cerebellitis. J Neuroimaging 12: 72-74

Then i look for the texts on Pubmed.Some are with free fulltexts. Some other i can read by my library. Others only by the abstracts given on Pubmed..

It would be needed a specialist here for to say if perhaps it would be better to do something against Varizella instead against HHV-6, but this could be a theoretical question. But as Valcyte could help even against Varicella (i am not completely sure in this moment, doctor knows) Valcyte could be the right medication anyway.

It is written also in this chapter 7, that the "incidence of acute cerebellar ataxia is higher in younger children, ages 2 - 4 years (...) but may be seen in older children (..) and in adults (Sugiyama et al., 2000).

See: Sugiyama Y, Homma M, Yamamoto T(2000) Acute rhombencephalitis: neuroimaging evidence. Intern Med 39; 486 - 489)

Here we could learn about the incidence ot this sort of cerebellar ataxia in adults; when does it happen? In which cases is it happening? Etc.. I have still not read this text, but i would be curious..

Have a good rest of the day,

Kind regards,


Anyway there have been three results with the pubmed search for varicella reactivation ataxia

Me, i had an herpes zoster 2008 as i was stationary after stem cell transplantation. Not so sure if my actual status has nothing to do with this. In this study you can see that some of the patients never were diagnosed by reason of their cerebellar ataxia; but this could have been cause in the environments of herpes and varicella, even if this agents would have not been detected....

Hoping for a good outcome for everybody there in the forum!


J Neurol. 1993 Jan;240(1):17-20.

Cerebellar encephalitis in adults.

Klockgether T, Döller G, Wüllner U, Petersen D, Dichgans J.


Neurologische Klinik, Universität Tübingen, Federal Republic of Germany.


We examined 11 adult patients with cerebellar encephalitis (CE) during the acute phase of the disease and at least 12 months later. Five patients were aged between 23 and 31 years, 3 patients between 43 and 44 years and 3 patients between 60 and 64 years. Serological tests gave evidence of Epstein-Barr virus infection in 4 of the 5 young patients. Two patients had serological evidence of varicella-zoster virus reactivation, whereas the serological findings were negative in all other cases. All patients in the younger and middle age groups recovered within 3-30 weeks after onset of CE. If at all, they had only minor cerebellar deficits at the follow-up examination. Magnetic resonance imaging (MRI) examination performed at the follow-up examination was normal in all of them. In contrast, 2 of 3 patients older than 60 years had persistent cerebellar ataxia following CE. In these patients, MRI revealed infratentorial atrophy. Our data show that the clinical spectrum of CE in adults is wider than assumed so far. In addition to typical cases of CE in young male patients with good recovery, CE may also occur in older patients and give rise to persistent cerebellar ataxia.

Comment in

[PubMed - indexed for MEDLINE]

Funnily enough I think my Ataxia was caused by a virus.In about 2007 while I still teaching I had a strange virus.I had a dry cough that went on for weeks.Then it seemed to go bacterial and my doctor at the time tried an anti biotic.That didn't work so we tried Aureomycin which I believe is a strong broad spectrum antibiotic.My nose felt very weird at the time and it felt as if I was breathing Sulphur or something else which burnt your nose.Then I had balance problems and then finally was diagnosed with CA.No known cause.

Back in 2000 I had Shingles but although I didn't have many spots I had the depression ,mucsle aches and fatigue.One of my class had chicken pox at the time.I think perhaps I caught it then.

I often wonder where it came from.But then again it could have been from anyhting.

Dear Marie,

perhaps a MRI could show something relevant? ( "MRI revealed infratentorial atrophy.")

Or: Do you know your titers and antibodies for HHV etc?

MRI taken four years ago at my insistence showed disproportionate cerebellar atrophy ie ther were too many white bits in the cerebellum.Only then was I taken seriously.

I knew I wasn't going potty.

Don't know about antibodies for HHV.Know my mother who is 85 and now got Alzheimers always has had very bad Psoriasis.

So has sister and nephew.

Bellieve that is hereditory as well as related to immunosupressant disease.Confused.

Why couldn t it be caused by both? It s not easy. Actually i have already established a handful of causes for my ataxia.Hopefully we will have any advantage of all our intentions getting a a helpful diagnosis (helpful to find a good treatment).

Sorry for the mistake- , not for HHV, but for varicella and others lik EBV.. Citing the text: "Autoantibodies - Some evidence for a humoral immune mechanism in the pathology of acute cerebellar ataxia also has been found (Table 7.4.). In several pediatric cases of post-varizella ataxia,serum antibodies to pericentrin, the centrosome antigen of cerebellar cells, were found (Adams et al., 2000; Fritzler et al., 2003). (and in the following: antibodies found in connection with cerebellar ataxias of other cause are listed. Last sentence:) "There have been no experimental studies establishing a pathogenic role for these various putative autoantibodies)"

Adams:C, Diadori P. Schoenroth L et al. (2000). Autoantibodies in childhood post-varicella acute cerebellar ataxia. Can J Neurol Sci 27: 316-320. (Free Fulltext)

Fritzler:MJ, Zhang M, Stinton LM et al. (2003). Spectrum of centrosome autoantibodies in childhood varicella and post-varicella acute cerebellar ataxia. BMC Pediatr 3: 11.