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.
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.
