So I'm wondering which doctors in the US still treat ME with antivirals

Judee

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Just wondering if there are still doctors in the US who prescribe antivirals to treat this disease. Maybe one who also offers virtual visits since traveling is so hard for us.

Asking for a friend but I would be interested too. :)

Thank you.
 
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Zebra

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@Judee & @Rufous McKinney

Stanford Chronic Fatigue Clinic actually favors video visits over in-person visits now.

However, at the present time the patient must be located in the State of California during the video call.

How they verify this, I don't know. My next appt is in August, so I guess I'll find out then, and I can post what I learn.

The Clinic sent me a letter about this location requirement, and the Clinic stated that it's actively looking to expand its service area for video visits. So, it might be worth calling the Clinic directly, and asking questions about out-of-state video visits.

@Judee: Dr Hector Bonilla and his physician assistants can and do prescribe antivirals, when appropriate. Based on my appt last year, they will also push the patient to add low-dose naltrexone, and eventually Abilify.

If that approach has changed, hopefully someone will chime in and let us know.
 
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hapl808

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Is Stanford particularly useful for CFS at the moment? I thought their original success with antivirals seems to have faded away on closer examination. I've somewhat given up on doctors and just trying to find solutions that work for me (for antivirals, things like andrographis, artemisinin, allicin, knotweed, etc). But a real doctor who knows what they're doing would be nice if we're making wishes.
 

Zebra

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humm m....I"m in California....maybe I should be trying to....get them to call me?
Why not give it a try @Rufous McKinney?

The only thing you have to lose is an insurance co-pay and 40-60 minutes of your time.

It's very likely that if you called this week, your first-time appt won't be until 2023. So why not at least secure an appointment, and then you have plenty of time to prepare or change your mind?

I will post a link below that contains the telephone number.

One frustrating thing about Stanford is that every call (even when you are an established patient) goes through a generic call center. So, be prepared to spend some time on hold and then end up talking to someone who may not be able to answer all your questions, but will relay them to someone else, and that someone else will call you back in 24 to 48 business hours.

While this is frustrating to me when I don't feel well, it serves as a layer of protection between the public and the actual clinic health care providers, which allows them to focus on patient care.

Additional information:

I am on Medicare and they accept it across the entire Stanford Health Care Clinics, Hospital, and Physicians. No "pre-authorization" necessary.

After your first appointment, if you and your doctor feel blood work is necessary, and there is no Stanford Lab near you, they will route the lab order electronically to LabCorp or Quest.

In summary, they really know how to make it as easy as possible for a CFS sufferer to obtain health care, thus eliminating any real, or perceived, barriers to access to that care.

WEBSITE: https://med.stanford.edu/chronicfatiguesyndrome/patient-care.html
 

Zebra

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From FAQ on Stanford CFS Clinic website:

How do I make an appointment?
Please contact the New Patient Coordinator at (650) 736-5200.

How do I get on the waiting list?
The Stanford ME/CFS initiative waitlist is very long—4 to 6 months. We are accepting new patients as quickly schedules allow.

Please contact the New Patient Coordinator at (650) 736-5200.
 

Zebra

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well, I think I'll call. Im' already on LDN. Virtual sounds possibly viable!
That's wonderful @Rufous McKinney!

After you secure an appointment, feel free to send me a personal message if you have any questions or concerns about my personal experience at the clinic this far. I'd be happy to hear from you!
 

Shanti1

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I was prescribed my first antiviral last year by Dr. Daniel Dantini in Palm Coast, FL. At that time, he also offered telemedicine. Telemedicine was out-of-pocket only, but he would take my insurance for an office visit. My husband drove me the 4 hours to see him in person and I left with a prescription for valacyclovir and LDN.

I did come to the visit with labs already done for EBV, CMV, HHV6, and Parvovirus Titers, which I knew from his book are the main ones he tests for, and he prescribed accordingly, based on my labs and symptoms.

http://www.drdantini.com/
His book, written in 2008: The New Fibromyalgia Remedy: Stop Your Pain Now with an Anti-Viral Drug Regimen

I wouldn't say that Dr. Dantini was really knowledgeable, but he is a believer in the viral etiology of FM and ME/CFS. He had FM himself and recovered using antivirals. He also works with food sensitivity testing.

He is getting on in age and is probably close to retirement. He is very kind and reminds one of an old, small-town doc from 50 years ago. Trying to have a conversation with him about a lot of the info on this forum would probably be fruitless, but if you are looking for a straight-up antiviral, he could be your guy. Office staff are very nice.
 
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I was able to get into Standford in about 6 weeks from the referral but I was willing and able to be seen in person at 8am and be seen by a nurse and not a doctor. I only was seen once last month and I talk to her again next Tuesday. her name is Jallisae Maria Nedi, NP and she was very kind. She did ask me if I have ever taken any antivirals when i was seen.
 

Judee

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I did come to the visit with labs already done for EBV, CMV, HHV6, and Parvovirus Titers, which I knew from his book are the main ones he tests for, and he prescribed accordingly, based on my labs and symptoms.
Do you think he would put in an order so I could have those done through a clinic here if/when I made an appointment with him. (I don't have a doctor right now so no one here to order those for me and I don't think the one I had would do it. She said "We've already tested for everything." Even though I've only been tested for a few viruses/pathogens. :()

I still don't know if I could manage to make a trip like that but he would probably be more do-able than CA especially since my sister goes to Florida to visit her daughter from time to time.

Her daughter is on the other side of the state but maybe if I offered to pay for her ticket down there she would take me. ??? (I can at least dream about it maybe. :))

Also did you say after the initial visit he lets you do virtual visits instead and which antivirals was he willing to prescribe?
 
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