Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Viral Parkinsonism

Discussion in 'General Treatment' started by stiffler, Oct 30, 2016.

  1. stiffler

    stiffler

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    Hello all. I am new to this CFS/ME world but I think it fits more closely to what I am dealing with. I started off 4 plus years ago with shoulder blade pain, neck pain,, rigidity (flu-like fatigue) and a tremor.

    The tremor got all of the attention and I was boxed in with a label right away. Parkinson's... not Parkinsonism which is a mimicry of the classic lack of dopamine.

    I tit-rated up and down with the max/min dosage of Sinemet. I tried Rytary which is a combo slow/fast release of Ldopa. I switched to Mucuna to play with dosages and stay away from carbidopa (it depletes vitamin B6). What I came away with, if I took away the tremor, it would put me right in with CFS/ME. Pain, fatigue, depression, flu-like all day malaise. My tremor seems to be more controlled now with an anti-inflammatory.

    So that leads me to believe that I have Viral Parkinsonism (or HSV-1 Encephalitis). That is self-diagnosed at this point. They say it's quite rare but it does exist. The flu pandemic of 1918/1919 had a lot of accounts.

    I have also been working with a functional medicine doctor. We tested for viruses. I have active EBV, CMV, HSV-1, HHV-6. I have since been working with another doctor who is familiar with CFS/Fibro as he has dealt with it himself for 30 years. I am now taking valacyclovir, L-lysine, LDN, Baicailin... and a bunch of herbal immune support and anti-virals.

    After a few good days here and there for two months, I have been blessed with a 5 day stretch of feeling pretty good.

    My questions for this group: I know that the Valtrex works on EBV. My doc doesn't prescribe anything really for CMV or HHV-6, should I be proactive and try to get something in addition, like Valcyte?

    I have not been tested for enteroviruses.. should I or just add Oxymatrine and assume that I have those as well?

    Why don't I see any info on intravenous acyclovir? I feel this thing in my CNS and brain for that matter. I am Mr. Doom and Gloom when this thing flares up and when I have a handle on it, it seems like I forget about the bad. I swear I could feel this thing replicate on daily and 4-5 day patterns.

    The treatment for acute encephalitis is intravenous, this seems like the same except low grade infection...Has this been tried with any success?
     
    merylg, leela and picante like this.
  2. picante

    picante Senior Member

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    Helena, MT USA
    I hope someone has some info for you, because these are things I would like to know, too.
     
    leela likes this.
  3. Hip

    Hip Senior Member

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    The post-encephalitic parkinsonism you think you may have is connected to the 1917 epidemic of encephalitis lethargica.

    The influenzavirus pandemic of 1918/1919 was thought to be the likely cause of the encephalitis lethargica epidemic, but there is some suggestion that encephalitis lethargica may have been due to an enterovirus outbreak that happened to occur at roughly the same time as the 1918/1919 flu pandemic. See this thread:

    Evidence for enterovirus as the cause of encephalitis lethargica

    The enteroviruses linked to ME/CFS are coxsackievirus B and echovirus. Dr John Chia is well known for his interest and treatment of enterovirus-associated ME/CFS. He finds that only the ARUP Lab neutralization tests are sensitivity enough to reliably detect the chronic enterovirus infections in ME/CFS patients.

    An elderly family member is showing some early signs of Parkinson's including tremor in the hands. He like me was exposed to the coxsackievirus B4 that in my case appeared to trigger my ME/CFS. Not sure if that has any bearing; he did not have encephalitis.


    Oxymatrine is an immunomodulator that is thought to boosts the antiviral Th1 immune response. Antivirals for enteroviruses are listed in this post. The strongest ones are interferon and ribavirin.

    Valcyte is a strong antiviral for HHV-6 and cytomegalovirus, but is quite expensive, though can be bought more cheaply at places like alldaychemist.com.



    The following antioxidants have been found useful for Parkinson's disease. N-acetyl-cysteine looks particularly good.

    N-acetyl-cysteine
    N-acetyl-cysteine in the treatment of Parkinson's disease. What are we waiting for?

    Vitamin E
    Vitamin E therapy in Parkinson's disease

    Lycopene
    Protective effect of lycopene on oxidative stress and cognitive decline in rotenone induced model of Parkinson's disease

    N-acetyl-carnitine 500 mg + Alpha lipoic acid 200 mg
    Combined R-alpha-lipoic acid and acetyl-L-carnitine exerts efficient preventative effects in a cellular model of Parkinson's disease

    Fisetin
    The neuroprotective effect of fisetin in the MPTP model of Parkinson's disease



    Other Parkinson's treatments to look at are:
    Rifampicin (dissolves fibrils in Parkinson's), pyrroloquinoline quinone (inhibits amyloid fibril formation), low dose ibogaine / Iboga (boosts GDNF) — see also the ibogaine derivative drug CKBR-12.
     
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  4. Daffodil

    Daffodil Senior Member

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    @stiffler first LMAO at your screen name. I remember that character

    if it were me and I had already tested for the herpes viruses, I would also test for Lyme via the LTT ELISPOT for Borrelia...and the co infections too. I think that can also mimic these brain conditions.

    I did antivirals for many yrs for CFS but they did not help me much. I had severe neuro symptoms but slightly different from yours. I had MAJOR cognitive issues.

    I have experienced some improvement on antibiotics.

    good for you that you did not take the doctors' word for it and did your own investigating

    xo
     
    merylg likes this.
  5. veganmua

    veganmua Senior Member

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    Wow, I believe my ME was triggered by HSV1. Although, according to Wikipedia 'Without treatment, HSE results in rapid death in approximately 70% of cases; survivors suffer severe neurological damage.' So you would now be suffering from the neurological damage, if the virus was still active you'd probably be dead. I was on acyclovir orally for a couple of years, no ME symptom improvement, although it did prevent the massive full face cold sores I was getting at the time.
     
  6. stiffler

    stiffler

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    Thanks Hip, very good stuff, thank you very much!

    Daffodil - I will get tested for Lyme. I am responding favorably with the Valtrex so far but I have a long ways to go.

    Vegan - I know that Acute Encephalitis is fast acting and lethal. What we are dealing with in ME seems to be a low grade version, IMO. My first symptoms and longest lasting are my back issues. I always feel like my CNS/Spinal cord is inflamed. I think this is where the virus resides mostly within me. Treatments of intravenous acyclovir (not oral) make sense to get at the CNS, just like the acute treatment. This is a crafty virus with it's ability in not killing the host. I do by the way have neurological damage. My right arm/hand has never regained dexterity regardless of how much Ldopa I ingested.
     
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  7. JES

    JES Senior Member

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    If you indeed have Herpesviral encephalitis, then high-dose IV acyclovir would be the treatment. In practice though it seems that acyclo/valacyclovir doesn't do much for most CFS/ME patients. According to Wikipedia article:

    "Other viruses can cause similar symptoms of encephalitis, though usually milder (Herpesvirus 6, varicella zoster virus, Epstein-Barr, cytomegalovirus, coxsackievirus, etc.)."

    If you ask me, there is no specific reason why you should suspect HSV-1 encephalitis over any of these other viruses. I would say HSV-1 is less likely simply because it most of the time results in serious/lethal neurological damage, which is typically not seen in CFS/ME. Enteroviruses, for example, have actually been found in postmortem brain biopsies of CFS/ME patients (source), and EBV is believed to be a factor behind some cases of MS as well as CFS/ME. EBV would be treatable with acyclovir, whereas it will do nothing for CMV or enterovirus infections.
     
    merylg likes this.
  8. stiffler

    stiffler

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    Thanks Jes

    The only reason I mention HSV-1, is that I could find scientific articles of people having HSV-1 and their treatment of intravenous acyclovir. I understand it's acute and most if not all treatment is for an acute infection. My highest titer level of all the viruses active happen to be HSV-1 (Igg 122.8 / Igm 1.2) but I know that doesn't mean that one is the culprit of doing all of the damage.

    I just can't help but think that whichever virus it is, it feels like it is in the central nervous system, low grade, inflaming within, out to nerve endings and somehow in the brain or impacting the brain. If intravenous acyclovir works for an acute infection, would it not possibly work for a low grade one as well? My short term (2 month) treatment with valcyclovir has been a wild ride of what feels like cycles of replication both within a day and every four to five days. Right now, I have a stretch of 6 very good days, not perfect, but I feel 80% human rather than my usual 50%. I just want to be done being half the man I used to be.....
     
  9. JES

    JES Senior Member

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    I feel your pain, this is exactly the same problem as I have: CNS and brain inflammation symptoms much more than other typical CFS symptoms (daily anxiety, brainfog, ringing ears, small fiber neuropathy, etc.). If the virus is susceptible to acyclovir (HSV, EBV), then I see no reason why it couldn't work for a chronic infection as well, though I have read from many sources that it might take a year or at least several months before benefits from acyclovir would appear in CFS patients. In contrast, those who benefit from Equilibrant seems to respond in a matter of a couple of months according to Dr. Chia.
     
  10. stiffler

    stiffler

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    Jes
    If I understand correctly, intravenous acyclovir works much faster but is quite expensive. I just haven't heard too much about ME patients with having it intravenously, unless as noted an acute infection (IE; HSV encephalitis).

    For the pill version valacyclovir seems to be favored and more effective over acyclovir (pill)

    Have you tried Equilibrant?
     
  11. JES

    JES Senior Member

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    Yeah, actually I'm trialing Oxymatrine (the primary ingredient in Equilibrant) at this very moment, since my stomach can't handle some of the other herbs blended into Equilibrant. I have only been able to use Oxymatrine at a low dosage due to the dizziness it causes, but I eventually plan to go up higher if the side effects allow. So far it hasn't made a big difference except for improving sleep.
     

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