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helen70967 helen70967

At my wits end

I was diagnosed with CFS, Fibromyalgia and Arthritus in 2006. Since then I have worked through the various treatment programs that my doctors have suggested. However, I have had no level of recovery. I am now 33 and am worse than I have ever been, having to wear adult nappies, I'm on several medications and have to be dressed and often fed. Does anyone have any thoughts on how I can lift myself emotionally because to be honest I'm not sure how much more of this I can take.

26 Replies

  • JesseS JesseS helen70967

    The author of Enteroviruses .com  told me that the Belgium is far ahead of everyone else in CFS research and treatment.  Have you been tested for the enteroviruses in Coxsackie B group and the closely related Echoviruses?  If you have been, were they serum neutralization or PCR tests?  The Enterovirus Foundation doesn't recommend PCR [Polymerase Chain Reaction] tests because they miss most chronic enterovirus infections.  I have been infected with Coxsackie B6 for over 7 years, but I haven't bothered to have the Echovirus test yet because of the expense [I'm in the US and health care here is costly] and there is no approved treatment for either anyway.  Encouragingly, there is good evidence that the drug Fluoxetine [Prozac] has antiviral activity against Coxsackie viruses and I'm eager to give it a try.  Strange that an antidepressant would also be antiviral.  

    • helen70967 helen70967 JesseS

      As far as I'm aware the doctors haven't tested for any of those things. This is something I shall ask them about next visit. Thank you for the heads up. I am already on Fluoxetine, it seems to be one of the go to meds here in the UK. Thank you again.

    • JesseS JesseS helen70967

       Hi again Helen.  I'm curious what dosage of fluoxetine you're taking and how long have you been on it.  After some research, I think it would be wiser for me to take it as part of a multi antiviral cocktail instead of alone to minimize the chance of resistance, like they do with HIV treatment.  I previously took a Chinese medicine called Ku shen [oxymatrine in English] and it worked great for about two weeks, then lost effectiveness.  It still doesn't work and I can't be sure but it seems probable that the virus[es] became resistant.  That's why I'm afraid to take fluoxetine alone.   So far I've found a promising looking ayurvedic medicine called Tulsi that might be an option.  Hang in there and be very careful about what you eat.  Andrea [Enteroviruses .com author] suspects undercooked shellfish were the source of her enteroviruses.  I'm almost certain my virus was in a head of lettuce that probably came up from Mexico.  Irrigation water there often contains raw sewage. I just didn't wash it well enough.  Our FDA agency knows that enteroviruses are found on a variety of fruits and vegetables and can easily survive for the shelf life of the produce, but sadly they don't realize that some of them can cause serious chronic illness.

    • helen70967 helen70967 JesseS

      I'm currently on 40mg Fluoxetine but have taken 60mg in the past with a different doctor. I've been on it at the varying doses for around 10 years.

      At present the doctors are saying that I got my illness from having Viral Meningitis when I was about 12 years old but will pay more attention to what I eat and where it comes from, thanks for the tips.

    • JesseS JesseS helen70967

      I'm curious if you think Fluoxetine worked better for you when you first took it.  If that's the case, and you do have one or more enteroviruses, maybe they have developed resistance to the drug. These viruses have a high mutation rate.   That's what I'm afraid of which is why I'm trying to find other anti enterovirals to take with Fluoxetine.  I found another Chinese Medicine called Chai Hu [Bupleurum root] that looks promising.  I only wish I hadn't taken the Ku Shen [oxymatrine]  by itself because it definitely did work.  Enterovirus experts believe victims will need to take multi antiviral cocktails to eradicate the viruses completely.

    • jackie00198 jackie00198 JesseS

      My doctor, Dr. Chia, gave me a Chinese supplement, Equilibrant, for enteroviruses that he said helped a certain percentage of his patients. It didn't help me, unfortunately. I'm not sure how someone would get Equilibrant if they were not his patient.

    • JesseS JesseS jackie00198

      I checked and Equilibrant is available online.  Not exactly cheap but definitely worth a try for anyone with CFS/Fibro.  I assume you've already taken Fluoxetine and how did it work?  I hear it's pretty tough for the first month or two before it starts working.

    • sanya11314 sanya11314 jackie00198

      I got Equilibrant online (very expensive) and the instruction was, to start with an eighth of tablet.

      The positive side: you could contact the company and ask them individually how to go about it.

      Has anyone tried to ever split this thing AND being able to swallow it? (It is reeeeallly bitter)

      I can't split this crumbly tablet just into pieces.

      So I had to pulverise it and then take an eighth of it and couldn't get it down.

      I thought of buying empty gelatine pill capsules and put it in there, then again I have animal products. Don't want those pill covers unless vegan, but haven't found any EMPTY ones.

      Since then it is lying in my cupboard and it was meant for my suffering daughter (who turns out to  have vascular compressions = something physical, not viral, causing all the pain and as a result very fatigue as she can't find restful sleep with pain and malabsorption, guts are not working if veins and arteries are compressed)......

      I have turned to a different diet, far more fruits and veggies, often as smoothies, freshly, organic as possible and grow at home what I can.

    • jackie00198 jackie00198 JesseS

      No, I've never tried Fluoxetine. I believe it's a type of antidepressant? I have terrible side-effects with any antidepressant I've taken in the past, even on the smallest dosages. An ME/CFS specialist I used to see, Dr. Paul Cheney, highly recommended against people with ME/CFS taking antidepressants. Of course, sometimes, for people who can tolerate them, they can be a life-saver.

    • JesseS JesseS sanya11314

      I only took Oxymatrine [Sophora root extract] which is one of the ingredients in Equilibrant but it started working about 10 to 12 hours after I took it and worked great for about two weeks then became ineffective.  I think it's wise to take multi compound formulas like Equilibrant instead of just single ingredients.

    • sanya11314 sanya11314 jackie00198

      you are much better than me cutting it, it crumbled under the blade, so I crumbled it all, spread it into a circular shape and tried to work out the eighth part. ;-)

      BUT the taste, I can't go passed the taste.

      I can't find vegan empty capsules either.

      Also I would not like my child or me to depend on it ever. How long does one need to take Equi?


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