My experience with several ME/CFS doctors

I have seen several CFS/ME doctors since I was officially diagnosed in 2015 and I thought it might be helpful to others to relate my experience.

Dr. Bela Chheda - Dr. Chhed was the first doctor I saw and in my opinion the best. I saw her for about 4 years before I relocated to the east coast. She is thorough, takes her time and is constantly looking for new approaches. The one drawback is it is expensive to see her. I was paying over $600 for an appt and that may have gone up.

Dr. Bonilla (Stanford CFS clinic) - They took my insurance so I decided to try and see what it was like. Appts. where short and Dr. Bonilla has a set protocol that he uses. It didn't feel like there was much exploration here. After feeling like this wasn't doing anything for me, I discontinued after 4 appts. The pro here is they accept insurance.

Dr. Alison Bested (Institute for Neuro-Immune Medicine) - Dr. Bested did no testing and prescribed no medications. She said that pacing was everything and if I did that I would get better. I found this very frustrating. Her basic theory is that if you can calm down your nervous system then some recovery is possible. I found her to be the least helpful. After 3 appts. I asked to switch to another Dr.

Dr. Annette Fornos (Institure for Neuro-Immune Medicine) - Dr. Fornos is also a functional medicine doctor. She seemed very knowledgeable and immediately began by having me do a lot of blood tests. I was hopeful after meeting her because she seemed to have a similar approach as Dr. Chheda. After the tests came back she said she thought I had Chronic Lymes disease (I wasn't convinced of this) but that the treatment required a lot of checking in a follow up appts. that I should try to find someone in my local area. She is in FL and I am in DC. I did look for a local person to who treats Lyme but most of them did not seem very reputable.

Dr. Susan Levine - After the situation with Dr. Fornos, I reached out to Dr. Levine and was lucky enough to get a phone appt. She also takes insurance and so that is a plus. She had me get a lot of lab tests. The appt. was very short maybe 10 min. A few weeks later we had a follow up appt where she went over the labs. She recommended anti-virals because of EBV titers and said she would call in the prescriptions and send a treatment summary. After two weeks I never got them. I emailed several times asking for them and finally I got a response. She sent the treatment summary and said she couldn't continue to see me because her patient load was too high and to see if my PCP could follow up on them. I don't know how good Dr. Levine is but it sounds like she is taking on a heavy workload.

I hope this helps others make treatment decisions. I can say that other then Dr. Chheda I've found the other doctors a bit lackluster which was disappointing since they all specialize in CFS/ME. But unfortunately that is the state of CFS/ME treatment currently. Here's hoping it gets better in the future.
Did any of her treatments make a significant difference in your symptoms? I'm not sure how to define "best" any other way.
I did experience an improvement. She initially treated me for Lyme as she thought it might be the root cause. When that didn't work she looked at Mass Cell Activation Syndrome and had me taking anti-histamines. This is when I experienced an improvement for about 2 years. After I moved to the east coast I had a crash and went to see 2 Mast Cell experts and both said I didn't have that. So it's hard for me to say that she helped my condition but it felt like it at the time.


Senior Member
I saw Klimas at NOVA in 2019 and only briefly saw the other doctors there. I do remember the one woman talking about pacing and focusing on rest. I had to brush that one off. I get where she is coming from but it's nothing new/worthy of paying for...

Klimas ran a ton of tests on me and referred me to several specialists in the U of Miami network. Ultimately I am still empty handed, but we did learn a few things about me that I never would have.

Treatment is still just beta blocker for POTS, elavil for 'IBS' (even though I know if have motility issues), and hydration/rest/positive thoughts :xeyes:
Interesting insight into the rare AGID Kanga Sue. I was not aware there was any legitimate use for Elavil. Learn something every day. Whatever works, right? I wonder why that works?

We were specifically talking about taking elavil for IBS, which is a fairly common (often junk) diagnosis. Very common for MD's to also tout Elavil as a pain management adjunt. Any MD that proposed Elavil for pain management or IBS-- I would look straight into their eyes and tell them to peddle their pills somewhere else.
Highly addictive and worthless for IBS or pain management. I know from personal experience.