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OCD due to PANS (high coxsackie, mycoplasma, etc.) rx VALTREX

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by kakrpa, Jan 19, 2015.

  1. kakrpa

    kakrpa

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    Taking Valtrex for the following results I received...suffering from severe anxiety/OCD. Can anyone relate to the following results? And has Valtrex helped?

    Coxsackie A IgG/IgM Antibody
    Coxsackie A7 IgG 1:800 High titer Neg:<1:100
    Coxsackie A9 IgG 1:1600 High titer Neg:<1:100
    Coxsackie A16 IgG 1:1600 High titer Neg:<1:100
    Coxsackie A24 IgG 1:1600 High titer Neg:<1:100

    Coxsackie B Virus Antibodies
    Coxsackie B Virus, Type 1 1:320 High <1:10
    Coxsackie B Virus, Type 2 1:80 High <1:10
    Coxsackie B Virus, Type 3 1:160 High <1:10
    Coxsackie B Virus, Type 5 1:160 High <1:10
    Coxsackie B Virus, Type 6 1:80 High <1:10

    Immunoglobulin G, Qn, Serum 764 mg/dL 700 - 1600
    IgG, Subclass 1 408 Low mg/dL 422 - 1292


    M pneumoniae IgG Abs
    549 High
    U/mL 0 - 99 Negative: <100 Indeterminate: 100 - 320 Positive: >320

    Immunoglobulin E
    Total 3 (LOW END) IU/mL 0 - 100
     
  2. halcyon

    halcyon Senior Member

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    As far as I know Valtrex doesn't have any antiviral action against enterovirus.

    Chronic enterovirus infections have been associated with anxiety and psychological problems.

    You mentioned PANS so I assume the anxiety/OCD started abruptly following an infection? What other symptoms do you have currently? Are you in the US?
     
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  3. kakrpa

    kakrpa

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    Thanks halcyon! Yes, I'm in the US. I didn't realize that about enterovirus and anxiety/psych problems, but that makes perfect sense. Yes, the anxiety/OCD did start a few weeks after becoming very sick (it was most likely either mono or walking pneumonia), and the walk-in clinic didn't help much since it was assumed viral but gave me abx anyway. I had never experienced anxiety like what started a few weeks after that - it was unreal. I went to the Dr and was rx'd anti-depressants (this was in 2002?) and have had to remain on them ever since. I don't have any tics, primary symptom is anxiety/pure OCD.

    I'm a few days into Valtrex (prescribed by Dr T) - what best helps with enteroviral infections?? How does treatment differ btwn Coxsackie and Mycoplasma? So new to all of this... thank you for your help!
     
  4. ukxmrv

    ukxmrv Senior Member

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    London
    Have search for the work of Dr Chia (there are threads on this forum). His son had an entroviral infection and he is one of the USA doctors with an interest in that area.

    For earlier work have a search for Dr Richarson in the UK who treated PWME and other UK doctors with early entroviral knowledge
     
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  5. halcyon

    halcyon Senior Member

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    @kakrpa It does make sense as enteroviruses can directly infect brain cells. If you live in California, or have the ability to travel there, Dr. John Chia is the foremost expert on enterovirus and ME. The wait list to see him is quite long. I am actually scheduled to see him in just a few days.

    Unfortunately there aren't any targeted antivirals available for enterovirus yet. The primary treatment that Dr. Chia uses is an OTC herbal antiviral/immune modulator that he developed called Equilibrant. Based on what other patients have reported, he will combine this with a few other borrowed antiviral treatments such as inosine, amantadine, or epivir until he finds a combination that the patient responds to. He has also used replacement immunoglobulin for those with low Ig levels. I see you are borderline low in total IgG and low in IgG1. My understanding is that it can be tricky to get this therapy approved by insurance companies, but it might be something to look into.

    I don't know much about mycoplasma but it is a bacterial infection that is treated with antibiotics. Dr. Martin Lerner has this to say about it:

    I'm not familiar with how other ME doctors treat it.
     
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  6. kakrpa

    kakrpa

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    Have an update from some additional labs... I have high EBV, and high HHV 6 too. Can Dr Chia handle this combination of high coxsackie, mycoplasma pneumoniae, EBV, and HHV 6? What about Dr T instead?

    EBV Ab VCA, IgG = 54.8 High (range 0-17.9)

    HHV 6 IgG antibodies = 7.78 High (range 0-0.99)
     
  7. halcyon

    halcyon Senior Member

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    As an infectious disease doctor, I assume Dr. Chia would have some idea how to treat all of those infections yes.
     
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  8. kakrpa

    kakrpa

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    Thanks @halcyon - I would like to consult with Dr Chia at some point...am in the Midwest and can't afford a visit to him at the moment. Wonder if equilibrant is something I should try. Have u used it? Just curious.
     
  9. halcyon

    halcyon Senior Member

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    Yes, I am presently taking Equilibrant and have been for a number of months. It has definitely helped me. It can be difficult to tolerate, you have to titrate the dose until you find the correct amount.

    The only contraindication for taking it is a history of autoimmune disease. Have you had an ANA test? How about a thyroid antibody test?
     
  10. kakrpa

    kakrpa

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    @halcyon good to know - thank you! Yep, ANA and Thyroid antibody tests both came back negative. Have you had labs checked since starting it? How do you know it's helping? Not trying to be nosy - just wondering what to expect. I took Valtrex for about 5 days and stopped as I felt an increase in emotional lability and anxiety (can't be certain it was due to Valtrex, though). I'd like to try another option, possibly Equilibrant. Tks for all of your input - appreciate it.
     
  11. halcyon

    halcyon Senior Member

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    I numerically score my symptom severity in a spreadsheet daily. Since I started taking it my daily scores have improved and I've been able to avoid extreme crashes. It has also substantially reduced my incidence of low-grade fevers and improved my GI symptoms. I'm taking it with two other plant based compounds called rutin and fisetin which have also provided some mild benefits. Also, Dr. Chia prescribed Epivir which I started taking a few days ago. This has provided the most immediate and substantial benefit of anything I've tried by far.

    If you do decide to try Equilibrant, buy a pill cutter, and start with 1/4 of a tablet a day. Dr. Chia advised me that you want to take the largest dose possible that doesn't induce serious flu-like symptoms. After you find that dose you can take it for a few weeks and then try to titrate the dose up. You can titrate up to 6 pills a day but it seems that most people can't tolerate anywhere near that amount.
     
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  12. Sidereal

    Sidereal Senior Member

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    Wowzers. For what indication, if you don't mind me asking?
     
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  13. halcyon

    halcyon Senior Member

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    For enterovirus. Apparently it's able to interfere with replication.
     
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