Just Got Off The Phone With Dr. Levine

[martiz]

{Moderators: Please delete or edit as needed.}

What a nice guy!

I had an appt with him for mid-March which I cancelled (I am already in his exercise registry but have not been able to get past pre-Month 2.

He just wanted to make sure there was not an OFFICE miscommunication that resulted in my cancelling my appt. Wow, I am shocked at the follow-up.

My neurologist wants me to see him as she is stuck. My endocrinologist doesn't want me to see him because she just ran extensive bloodwork and she feels a local doc might be able to get a little further than the neurologist; she doesn't feel I am strong enough to go out of town right now; and she doesn't feel the exercise program is suited for someone with ME/CFIDS due to the potential for a relapse. I agree with all of her reasons.

When I explained all of these things to him, he was very understanding. In summary:

He agrees that there aren't many specialists in Houston. He mentioned a name that I had not heard before but I didn't catch it. It was not Shabani or Nasir. He was just here yesterday teaching.

He understands that most people are not POTS only - that this is a very complex illness and there are many facets.

While he does focus on exercise, it is not his only focus.

While he does do some testing, he has found that the extensive testing doesn't always contribute to the treatment plan. He used to do the very exhaustive testing. Now, he does testing based on what he feels the patient needs and some patients need the advanced autonomic tests, while others don't.

He didn't seem to feel that medications were all that useful and that there were other non-medication methods of improving. I might be wrong here as it was a short conversation.

He was very nice, and very understanding. He wished me well and if I needed to come and see him in the future, to feel free to make an appt. He said Dr. Nasir sends patients to him as well as the other doc (I didn't catch his name).

He definitely understood chronic illness and was very nice. Not dismissive as most other docs.

I was very impressed at his follow-through. Rare even with the good docs.

Marti

[roxie]

Wow

[ramakentesh]

In conversations I have had he didnt seem as pushy about the deconditioning/grinch thing and also stated that POTS was complex and had many possible causes.

[janiedelite]

Martiz, thank you for sharing your experience. We didn't see any need for editing your post. We hope you see improvements soon.

[Trach]

So what will you do next?

[martiz]

Well, as nice as he was, I am going to see Dr. Suleman for the following reasons:

1. Dr. S. does extensive testing. I believe that it is important to have a snapshot of what my body is doing and what is not working. In addition to medication choices, there are other possible beneficial practices/lifestyle changes based on what is not working.

2. Dr. S. doesn't seem to focus quite so heavily on exercise. I am exercising but I am not willing to push my body into a relapse (which I have done twice with ME/CFIDS). Each relapse left me with less functionality than before.

3. Dr. S. seems to treat patients ongoing not just making a diagnosis which I think would be helpful. I got the feeling that Dr. L. would want to work with a doctor here and I only have an endocrinologist who is POTS friendly.

But Dr. L. may be someone I will see in the future if I can't make progress with Dr. S. He may catch something that has been missed. But I will give Dr. S. two or three years before moving on. It does make me forgive the Grinch remarks. Although I do fit his deconditioning theory, it seems unrealistic to state that deconditioning is THE cause. But I do think he has helped people and I think his staff is top-notch.

[jenglynn]

Thank you for sharing this story. I knew very little about him, other than the "Grinch theory" he talks about so I guess my opinion was probably more toward the negative because in my case his protocol isn't a possibility for me. But the fact that he took the time to call you and talk so extensively, and was so friendly... that is pretty rare! My EP Cardiologist has my cell phone # in his and calls me every couple weeks to check on me and I've always thought that was so amazing and the fact that he is taking the time to think of me between appointments and worry about me just makes me feel as if I am more than "just another chart" to him.

I am pretty impressed to hear that Dr. L would take the time to call you and be so warm, friendly and concerned. That definitely changes my opinion of him... and after I read your thread I did a little more research on him and saw that he does believe that this is a complex condition and it isn't a one size fits all type of protocol that he is talking about. I am always glad when I get the chance to humble myself for judging someone (no matter who they may be) too quickly and realize that there may be more to the story or person than I realize. It restores my faith in humanity and reminds me not to leap to conclusions so fast.

Jen