A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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can antivirals work where other avenues (hormones, supplements etc.) have failed?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by outdamnspot, Jul 4, 2016.

  1. outdamnspot

    outdamnspot Senior Member

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    Really desperate and at my wit's ends here .. I actually just got out of a psych ward (doctor's last-ditch attempt to help my severe depression), where they administered ECT, which only seemed to exacerbate my physical symptoms .. so I discharged myself, now slightly worse off than when I went in.

    I have such an awful concoction of symptoms: I crash with the smallest exertion (a warm shower), feel like I'm sinking into the ground when I walk, am constantly off-balance, really severe anxiety/dysautonomia (hypervigilance etc.) and noise-intolerance (bad in a noisy house), terrible cognitive issues, can't handle any form of stress, chronically hungry (never feel 'full'), sleep-Apnea like issues etc.

    I can see the things that are no doubt contributing to my issues: Vit D deficiency, B12 deficiency .. yet even trying to supplement these 'crashes' me and induces hypoglycemic symptoms. Right now, all I'm doing is replacing elecrolytes and magnesium.

    I was convinced it was my thyroid and chased that up with doctors, but supplementing never helped. I tried HC but it was far from the miracle cure I was hoping for (it might have even worsened my POTS).

    I don't know how much quality-of-life I can expect to get back. I would give anything just to go back to being a depression/anxiety patient, but can't even take meds anymore.

    I was kinda ready to top myself, having exhausted most things and being rejected by the medical community and family etc. .. but have been wondering how much a hidden infection might be making my life miserable (after focusing on the thyroid for so long). There is a GP I've found here who treats Lyme and Lyme-like infections, and seems to be relatively aggressive with IV antibiotics and antibiotic protocols (not sure if he uses antivirals as well, but I may try ask the receptionist).

    It's been a year since my symptoms began and there are tiny moments where I feel a glimmer of hope .. that maybe I can get back to some functioning, or at least out of this total hell.

    Is it possible that going after a potential infection could have benefits on other symptoms like the 'adrenal fatigue' and crashes, POTS, etc.?
     
    ScottTriGuy, merylg, ebethc and 2 others like this.
  2. Daffodil

    Daffodil Senior Member

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    yes. I would insist on the LTT ELISPOT test for Borrelia to be sure its Lyme.

    well, relatively sure..
     
    Last edited: Jul 4, 2016
  3. outdamnspot

    outdamnspot Senior Member

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    The thing is I'm in Australia (and never leave the city), so am skeptical I actually have Lyme .. however, I believe he also treats other chronic and Lyme-like infections. My symptoms pretty much all began to appear after I spent the week in bed with a virus.

    What kind of improvements should I realistically expect? I would've thought that if antibiotics/antivirals were a huge fix, a lot less people here would remain chronically ill.
     
  4. Living Dead

    Living Dead Senior Member

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    Have you actually tested your blood sugar when this happens? Maybe the symptoms come from something else.

    It seems they are giving away free glucose meters, given a doctor's prescription: https://www.contournext.com/meter-strip-savings/save-on-meters/save-on-contour-next/

    They make money on the strips you have to buy.
     
    Valentijn likes this.
  5. outdamnspot

    outdamnspot Senior Member

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    I do have a glucose meter. My blood sugar was spiking and dropping a lot before I switched to Keto. In all honesty, I haven't tested it when I supplement the Vit D/B12, but both do aggravate that 'crashed'/bottomless hunger feeling.
     
  6. Living Dead

    Living Dead Senior Member

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    I would test it just in case, as I've had "low blood sugar" and it turned out to be fine. If you have low B12 no antiviral is going to help you.
     
  7. ukxmrv

    ukxmrv Senior Member

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    Have you been tested for POTS or even had the "poor mans" test of BP/HR when lying flat and then standing up?
     
    Valentijn likes this.
  8. outdamnspot

    outdamnspot Senior Member

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    Fair enough, though I was taking B12 early on when my symptoms weren't too bad and still had to stop it due to the hunger. When I retried it later on, I had similar issues. Is it possible that really bad adrenals can make even basic supplements otherwise intolerable?
     
  9. outdamnspot

    outdamnspot Senior Member

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    When I was in hospital, I saw a neurologist and asked her for one, but she wanted BP/HR readings first. However, she told the nurse to do the readings sitting and then standing after 2 minutes .. I said I thought it was lying down + standing after 5/10 minutes, but she said no .. I was so depressed, I didn't bother arguing .. and I really want to ideally find a cause for all my weird POTS, balance-type issues etc.
     
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  10. Living Dead

    Living Dead Senior Member

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    Cortisol can increase blood sugar, so if your adrenals can't produce enough cortisol on demand I guess this could be related to your problems. Also it increases blood pressure.
     
  11. halcyon

    halcyon Senior Member

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    If it was a gastrointestinal or respiratory virus you might want to look into trying Equilibrant. I'm guessing that proper enterovirus serology testing is not available in Australia but there is a chance that this is the type of virus that is causing your problems.
     
  12. ebethc

    ebethc Senior Member

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    @outdamnspot - sorry to hear about what you've been through... sounds incredibly rough

    Re anti-virals: I have been taking olive leaf (natural anti-viral) this year and it's been a game changer.. It's the only thing that burst the swollen lymph node that I had for 2 years. With that said, quality makes a major difference... the brands I recommend are Pure Encapsulations Olive Leaf Extract and Design for Health Olive Leaf Extract. I took a cheaper brand in June, and it made me worse..Some purveyors use toxic chemicals (butane, etc) to extract the active constituents from the plant, so I believe that was the problem. I'm super sensitive to certain chemicals. Big waste of time, which stressed me out more, but back on track now.

    Pantothenic Acid (B5) and/or Pantethine: these are EXCELLENT for your adrenal, but go very slow. I took 200 mg P.A. last night, and that was more than enough... some info says 900 mg of EACH.. It helps w inflammation. Google B5 adrenal fatigue to learn more

    Don't know what your finances will allow, but Dr Kaufman at the Open Medicine Clinic in Mountain View, CA gets excellent reviews... When I have the money, I'm going to see him! after the first visit, you can do Skype w him. Maybe that's for american insurance reasons, though, so perhaps you could coordinate care from Australia between your primary care physician and him, if you're interested??
     
  13. Daffodil

    Daffodil Senior Member

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    @outdamnspot I also never lived in a lyme area and really didn't spend much time outdoors at all. but the LTT was positive. all the other tests, negative...

    years of antivirals.....probably toxic ones....didn't help. my illness also began with viral illness...

    so who knows .
     
  14. outdamnspot

    outdamnspot Senior Member

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    Have you been able to make much improvement in your condition?
     
  15. outdamnspot

    outdamnspot Senior Member

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    That's pretty much how I feel -- like my adrenals aren't producing enough cortisol to cope with any stress (a phone call overwhelms me ..). When I was housesitting for a friend and basically sat in bed all day, I was okay, but otherwise it's really tough. As a long-term anxiety suffer, I never really could envision how awful low cortisol could be .. it's its own special hell.
     
  16. ebethc

    ebethc Senior Member

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    try taking pantethine ... good for adrenal fatigue and more
    http://www.wellnessresources.com/ti..._cardio_health_metabolism_and_detoxification/
     
  17. Daffodil

    Daffodil Senior Member

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    @outdamnspot the cortisol is low because of some signalling problem or something from the illness...i believe it normalizes if you get proper treatment.

    when i began treatment, i was bedridden and was having trouble breathing. i think i would have died. now, i can take care of myself but still cannot work. but i have been ill 22 yrs now and am 45... that makes a big difference. if you are treated early, your chances of complete recovery are good.
     
    ebethc likes this.
  18. outdamnspot

    outdamnspot Senior Member

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    Well, I've been dealing with mental illness for 10 years (I'm 30). But all of these new symptoms began exactly one year ago, no doubt brought on by the stress of the former. There are many times where I've wondered if I would wake up the next day, and often leave notes for my family to check up on me.

    Anyway, I'm praying the doctor I see on Thursday might be able to do something for me .. or at least piece together all these bizarre symptoms. I've completely lost sense that it might be possible to feel anything other than utter torment.
     
  19. kangaSue

    kangaSue Senior Member

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    Check out last night's episode of Catalyst on the ABC, they were looking into whether or not Australian ticks can cause Lyme-like disease. No conclusions but there is ongoing research, maybe they might need some subjects to study.
     
  20. ukxmrv

    ukxmrv Senior Member

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    The Karl McManus Foundation has been working with Sydney Uni looking at Lyme

    http://www.karlmcmanusfoundation.org.au/

    I happened to be Australia when they asked for volunteers and gave blood (years ago).

    No sign of any of the normal Lyme or co-infections but they did find a past infection with something else unrelated I had not expected

    There is no lack of subjects to be studied in Australia.
     

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