CFS Specialist Recommendations

[Swim15]

I'm putting this here instead of the doctor's section because it didn't look like many people were seeing the threads so I apologize if it needs to get moved.

I was wondering if anyone could recommend CFS specialists - specifically ones that are easier to get into and see?

I think I am going to schedule one with John Chia but he is booking into next year and I am going to be starting a treatment protocol before then. Even if there are docs that just do phone consults then that would be great too.

Would like to see or consult with someone in the next 4-6 weeks if possible. Might be a long shot but figured I'd see

 

[Sushi]

I think I am going to schedule one with John Chia but he is booking into next year and I am going to be starting a treatment protocol before then.

Just be aware that most of these specialists have particular areas of interest and some are better at looking at the big picture than others. Dr. Chia’s focus is enteroviruses.

 

[Swim15]

Just be aware that most of these specialists have particular areas of interest and some are better at looking at the big picture than others. Dr. Chia’s focus is enteroviruses.

Yep I’m aware. I don’t agree with any one in particular but more just that CFS has a viral root the vast majority of the time. Chia has some of the best data compilation that I’ve seen and I’d rather go with someone who tackles the hard stuff.


I’m going to treat for EBV and herpes viruses which are relatively easy with the available drugs but if the cause for me is Coxsackie, which I suspect, then I’d want to go with him.

At the end of the day right now though I just need someone willing to prescribe some basic CFS drugs and be a 2nd pair of eyes on my decisions.

 

[hunter1899]

I’m also looking for a specialist to treat EBV/CFS. I’m in Louisiana. Haven’t had any luck finding one who’ll try Dr Lerners approach of high dose antivirals. Do any of the specialist work with telegraph or would I have to travel to another state?

 

[hunter1899]

Yep I’m aware. I don’t agree with any one in particular but more just that CFS has a viral root the vast majority of the time. Chia has some of the best data compilation that I’ve seen and I’d rather go with someone who tackles the hard stuff.


I’m going to treat for EBV and herpes viruses which are relatively easy with the available drugs but if the cause for me is Coxsackie, which I suspect, then I’d want to go with him.

At the end of the day right now though I just need someone willing to prescribe some basic CFS drugs and be a 2nd pair of eyes on my decisions.

When you say available drugs do you mean high dose Valtrex?

 

[Swim15]

When you say available drugs do you mean high dose Valtrex?

For herpes families? Valcyte has been shown more effective from what I’ve seen but could be a combo of Valcyte, valacyclovir, acyclovir, Monolaurin, cimetidine, and various others both rx and non script

 

[gbells]

I used a lyme disease network referral page to find an infectious disease MD. He didn't really help me though, just ruled out a bunch of infections and stopped. You can find boutique MDs who may be open to nonconventional treatments but insurance won't cover them except as out of network providers with a high copay.

I'm thinking back when I saw a local integrative MD. She had a positive coxsackie antibody test on me but didn't try to kill it (ie. like using oxymatrine supplement). Very inconsistent service. I eventually quit treatment with her and didn't get any results with my ME.

Here's a find a ME doctor link.
https://ammes.org/physician-and-clinic-database/

 

[max_yazhbin]

I used a lyme disease network referral page to find an infectious disease MD. He didn't really help me though, just ruled out a bunch of infections and stopped. You can find boutique MDs who may be open to nonconventional treatments but insurance won't cover them except as out of network providers with a high copay.

I'm thinking back when I saw a local integrative MD. She had a positive coxsackie antibody test on me but didn't try to kill it (ie. like using oxymatrine supplement). Very inconsistent service. I eventually quit treatment with her and didn't get any results with my ME.

Here's a find a ME doctor link.
https://ammes.org/physician-and-clinic-database/

I had a concierge doctor whom I was able to experiment using him, whereby I got a shit ton of testing before and after experiments as I read about other vectors of ME/CFS. I also have massachusetts poor people insurance which pays for any lab tests and the doctor can order from labcorp and quest, thus I told my doctor which tests I wanted, was able to justify it with some research reports and he ordered the tests. Most of the things that were on this forum were ruled out before I came to this forum, but many weren't tested and thus I am in the process of getting those tests, after my liver biopsy which I asked him to order for me and he agreed. It is not that hard to find these docs, but they require money, all in all, I spent maybe $1k - $1.5k on him, not a bad cost compared to docs who make lots of money and don't do what I want them to. I understand no everyone is in such a fortunate financial position.

 

[Judee]

I had a concierge doctor whom I was able to experiment using him,

Are you talking about the doctors that charge a monthly membership fee? I saw one site, though I would have to hunt to find it again, where the doctor charged like $300 a month to join her subscription service.

Is that what you mean?

 

[max_yazhbin]

I think that'd be considered a direct primary care doctor and I didn't have that one. In fact, they have a perverse incentive to keep stringing you along. I had one that I pay anytime I meet with him and if I don't like how he's treating me then I stop meeting with him. But these ones charge a high first time fee, just to lock you in to seeing them more, which is why I screen them with a free 15 minute call (they don't charge me). If they don't want to do that free call, I don't work with them.

 

[gbells]

Are you talking about the doctors that charge a monthly membership fee? I saw one site, though I would have to hunt to find it again, where the doctor charged like $300 a month to join her subscription service.

Is that what you mean?

The general concierge docs just give you more time and attention but they don't have any secret ME answers. There just aren't a lot of good treatments available in medicine due to the lack of research interest.

 

[Judee]

The general concierge docs just give you more time and attention but they don't have any secret ME answers. There just aren't a lot of good treatments available in medicine due to the lack of research interest.

I understand that but Max was saying that the doctor was willing to do all that testing and then that his "poor people" insurance (which is what I have too) paid for it.

We don't necessarily need a doctor who is knowledgeable about ME because as you say it is still a great mystery. We need doctors who are willing to work with us on the testing and prescribing things that might be helpful. Essentially we need doctors who realize they don't know the answers but are willing to still try to help us.

It is not that hard to find these docs, but they require money, all in all,

But these ones charge a high first time fee, just to lock you in to seeing them more, which is why I screen them with a free 15 minute call (they don't charge me). If they don't want to do that free call, I don't work with them.

But are these online doctors?

I guess I'm still a bit confused how you find these types of doctors. Sorry

 

[max_yazhbin]

I understand that but Max was saying that the doctor was willing to do all that testing and then that his "poor people" insurance (which is what I have too) paid for it.

We don't necessarily need a doctor who is knowledgeable about ME because as you say it is still a great mystery. We need doctors who are willing to work with us on the testing and prescribing things that might be helpful. Essentially we need doctors who realize they don't know the answers but are willing to still try to help us.





But are these online doctors?

I guess I'm still a bit confused how you find these types of doctors. Sorry

These are not online doctors in the sense of order a test online and they never speak to you. Mine was online but I speak to him on the phone or skype or zoom and whenever I wanted something I'd book an appointment and talk to him through those means. I found this particular doctor through google searching MCS doctors but am investigating other ways of finding people helpful to me such as the direct primary care route.

Another thing I do is go around the standard pharmaceutical route if there is an expensive pharmaceutical that I think the doctor won't order, thus I tell the doctor I am doing an experiment, ask for tests before and after and experiment with a small dosage of the drug to see if it does any good and if it did any harm. If it worked then I have proof it worked with the tests the doctor ordered and then he will typically order it. I have a sufficient relationship with the doctor whereby I will stop anything that makes me feel too bad and I don't feel better than when I started when I stop and the doctor knows I am willing to stop experiments if I think they're harmful.

I have developed many strategies to deal with the neglegence and evil inherent in the current medical system.