NYC Dr - treating CFS with antivirals - mia333 ?

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B8080d
New Member


Date Joined May 2015
Total Posts : 4
   Posted 5/10/2015 6:55 AM (GMT -7)   
Hi

I am new on this forum. I have been suffering for 8 months with CFS...a disease that is not recognized (at least not treated) here in France. I am still able to work but probably not for long. It started after an herpes-like infection (never sero-converted) and I know suffer from terrible fatigue, brain fog, diarrhea, tingling in my feets, back pain etc etc...There is only one Dr in europe treating people through antivirals (dr de meirleir in Belgium) but he does not use neither valtrex nor valcyte nor famvir. I can make the trip from paris to NYC / all the other docs I heard about (Montoya / Lerner / dantini...) are either too far away from me or too difficult to reach. I red a previous post where Mia333 was mentioning a dr who treated her through antivirals in NYC. I hope she will read these lines and be able to give me the contact...any other name would be appreciated...I am totally desesperated to live in a country where no doc is just willing to give it a try...I definitely got sky high EBVs and very high HHV6 titers. Thanks

AnnaBananna
Veteran Member


Date Joined Jun 2013
Total Posts : 789
   Posted 5/10/2015 8:49 AM (GMT -7)   
Hi there,

I just wanted to pop in and let you know that coconut oil is antiviral (google lauricidin - it's concentrated coconut oil), and there is an herbal med called Trilex that is specifically for herpes viruses and is quite good. I just started lauricidin and have noticed an increase in energy, same day that I started taking it. Both can be purchased online.

Personally I have chronic EBV and Cyto, so I totally understand. In fact, I'm quite sure that my Cyto just activated aside been flaring for two weeks and now have post herpetic neuralgia like pain. Try both meds that I suggested and I hope you can find a CFS literate doctor soon - it's really isolating to fight alone so come back and let us know how you're doing!

B8080d
New Member


Date Joined May 2015
Total Posts : 4
   Posted 5/10/2015 9:32 AM (GMT -7)   
Thank you ; I did the same buying two oils last week...I will let those work a little before trying yours. I confess you are right tO say how hard it is to try to find a treatment to improve when every doc is just considering you are just crazy and giving you anti-depressants...I definitely need an appointment with a doc...or I will end self medicating with pills ordered on the web...

Three Chord Monty
New Member


Date Joined May 2015
Total Posts : 2
   Posted 5/11/2015 12:27 PM (GMT -7)   
Hi, I am a longtime ME (CFS) patient in NYC, and would recommend Dr. Derek Enlander. His website is at enlander.com, and he does Skype consults for out-of-town patients, though if you can visit him that would probably be best. There are a couple of other ME specialists in NYC, such as Susan Levine; there's also Dr. Natelson, but he'd be the one I personally have heard the least good about from a patient perspective (bearing in mind that this is a difficult disease to diagnose and treat). Hope this helps.

B8080d
New Member


Date Joined May 2015
Total Posts : 4
   Posted 5/11/2015 12:35 PM (GMT -7)   
Thank you ; i Will try to reach one of them (probably Susan Levine). I Know Dr Elander Has the same kind of protocol as Dr de Meirleir in Belgium ; but I do not feel very comfortable with his antiviral-cocktail. Did it work for you ? I have high EBV and HHV6.

Three Chord Monty
New Member


Date Joined May 2015
Total Posts : 2
   Posted 5/11/2015 1:02 PM (GMT -7)   
I don't think that he's monolithic, as far as following KDM. In some situations, yes, others, no. I took Valtrex some years ago, but that seemed to be fairly mild, with few side effects. Dr. Enlander will administer Valcyte, which is much stronger, based on a high HHV6 titer. Dr. Levine prescribed me Amantadine when I was first diagnosed, many years ago, and that was so soon into the illness it's hard to say whether or not it did any good (and whether it could have). My understanding of this illness on the immune side (not even getting into neurological or other issues) is that there is a seemingly rotating number of pathogens that wax and wane. I have blood work done every year. And every year, there are pathogens that show high titers, and others that are within range. And they are different every year. For instance, one year I might have high titers for HHV6 and Parvovirus, with most others within range. The next year, those are under control, while EBV and Mycoplasma are off the charts. It's a difficult puzzle to try to get them all under control at the same time; some aspects of his protocol I find extremely helpful, while others didn't seem to do much for me. But I'm a longtime patient and recommend him highly as someone who knows the disease as well as anyone. I have nothing negative to say about Dr. Levine, and she diagnosed me; I just think he's a better doctor. Ironically their offices are in the same neighborhood, mere blocks apart, while there are so few ME specialists on the planet.

What's helped me as much or more than anything else, is the MAF878 yogurt probiotic. He does use injectable GcMaf with some patients, but it's difficult to get a handle on Nagalese testing. The yogurt is not quite the same thing, so I'm not sure it should be thought of as GcMaf per se, but it has done something remarkable that nothing else I've tried in all the years was capable of: restoring my sleep. And with that, comes an uptick in strength and stamina. I wish I could say it has returned me to the point of being able to work, but that's not quite the case. Still, it's the biggest improvement I've ever had. Just an anecdote, but it helps to remember that there are a lot of things that we take and don't necessarily notice whether or not they are helpful--it's tough to measure. Sometimes the only way to have an understanding that something was helpful is to experience what happens after we stop a particular treatment. The MAF yogurt is a major exception. Of course, a high enough titer for HHV6 resulting in Valcyte treatment is likely capable of doing the same thing, as is Ampligen. In my experience, it's been the yogurt. But, like I said, just an anecdote.
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