Antivirals, what doctor provides them, does insurance cover

[Kristine]

I'm a bit confused about the use of antivirals. What type of doctor will prescribe them for CFS AND does insurance pay for them? My primary doctor doesn't even write my CFS in my chart that much, as since its not a "disease" yet she feels the insurance ignores it. My insurance hates to pay for anything. I am 5 hours away from Harvard and hope that when trials or studies begin I can get help, instead of not having a CFS doctor that can help me here. Any help or direction would be much obliged. I hear a lot about Celebrex and I'm sure this is over and done with but when I was on Prednisone not to long ago, I was able to do more, even though I felt the exhaustion underneath. I don't know if it makes sense, like drinking tons of caffeine., you get a jolt, but your body knows it's a false sense of energy.
Kristine
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[Remy]

It really depends and people typically have to do a bit of research to find a doctor willing to prescribe antiviral therapy. Many people travel to see ME/CFS specialists.

You might have a look here at this list: http://www.cfstreatmentguide.com/doctors-and-clinics.html and call to see who might be using antiviral treatments.

Insurance is always a problem unfortunately. It really just depends on how your plan is written and what it covers and whether your doctor is willing to do battle with them for a treatment. This is another reason it is helpful to see a specialist. Not only are they familiar with the treatments, they are also familiar with the best ways to get them approved by insurance typically.

I wouldn't say Celebrex is over and done. It helps a certain number of people, just like any treatment.

 

[Farmgirl]

I'm a bit confused about the use of antivirals. What type of doctor will prescribe them for CFS AND does insurance pay for them? My primary doctor doesn't even write my CFS in my chart that much, as since its not a "disease" yet she feels the insurance ignores it. My insurance hates to pay for anything. I am 5 hours away from Harvard and hope that when trials or studies begin I can get help, instead of not having a CFS doctor that can help me here. Any help or direction would be much obliged. I hear a lot about Celebrex and I'm sure this is over and done with but when I was on Prednisone not to long ago, I was able to do more, even though I felt the exhaustion underneath. I don't know if it makes sense, like drinking tons of caffeine., you get a jolt, but your body knows it's a false sense of energy.
Kristine
​

@Kristine
Hi! If you dig into the archives on this website, you will find some articles on Dr. Martin Lerner (who is now deceased).He was an MD in Michigan who had ME himself and figured out how to treat the EBV other stealth infections as well as Lyme. Really smart guy!!​

www.treatmentcenterforcfs.com

There are helpful videos on there to watch, too. I am on Antivirals cuz my CD 57 was low and my EBV titers were active above 600, when normal is under 18. Every viral titer they tested on me was active high.

Get the right doctor will help. We drive 3 hours to mine. My husband makes a bed in the back of our Honda SUV and drives me there and back. He's a gem.

Hope this helps! FG

 

[Kristine]

Hi Farmgirl,
Can you tell me what type of doctor you see. Is it an Infectious disease doc? And I will read that about EBV and CFS. I first had EBV when I was a teenager and then nothing until it went sky high at age of 33, when I thought I had sinus infection. Developed the Fibromyalgia pretty severe once my numbers went down strange right? My husband will do anything drive, fly whatever it takes. I'm the problem, I just want my bed and that's it. That will be a big challenge. But when we heard about Harvard we said instead of 5hr drive we will fly if they can help with studies trials, etc. Are you still having high tigers?
Hope you are finding success
Kristine

 

[Kristine]

It really depends and people typically have to do a bit of research to find a doctor willing to prescribe antiviral therapy. Many people travel to see ME/CFS specialists.

You might have a look here at this list: http://www.cfstreatmentguide.com/doctors-and-clinics.html and call to see who might be using antiviral treatments.

Insurance is always a problem unfortunately. It really just depends on how your plan is written and what it covers and whether your doctor is willing to do battle with them for a treatment. This is another reason it is helpful to see a specialist. Not only are they familiar with the treatments, they are also familiar with the best ways to get them approved by insurance typically.

I wouldn't say Celebrex is over and done. It helps a certain number of people, just like any treatment.

Yeah, my health insurance sucks, they wouldn't give a simple topical treatment for my toe to ward off fungal infection and otc isn't working. They are awful and my Podiatrist sent it to them and they rather I take a pill that has destroyed people's lives and caused terrible side effects. I doubt they will pay for anything. That's why I hope Harvard will have trials. I am checking the list. Thanks so much
Kristine

 

[Zapped]

@Kristine I used AV about 6 years ago, even through Medicare which is notorious for findinding reasons to avoid payment.
I was using an Integrative MD who ran all kinds of tests with normal results. Along with some papers from me she said might as well try AV (Valcyte). It was otherwise $8000 for a 90 day supply. FWIW, I think the secret is to supply valid research publication on efficacy and be persuasive if your viral loads look high=&
BTW, Try a Valcyte search on Phoenixrising.me. There are good threads on pros and cons of AV as well as on antiretrovirals. (Both made me sicker - never again!)