journal entry 5/16/24

For those interested, I had my first appointment with Dr Katie Brown, the ME specialist that just started in Indiana last year. This is her plan to get me better. She has worked very closely with Dr Teitelbaum and other ME specialists. She also has ME and currently has minimal symptoms. She said she is very confident that we can get me to a place of functionality again. It's going to be a lot of sacrifice and work but it'll be worth it in the end.  

Plan: 

Phase 1 - Assessment and Treatment Plan

Phase 1 is dedicated to the gathering of information and holistic assessment of your condition. I will gather all the information I need in order to diagnose and treat you appropriately. This step involves taking an extensive history, reviewing your medical records, and conducting a physical exam. Once I have gathered all this information, I will create a formal report with assessment and recommendations for further workup and treatment.

Phase 1 includes:

Comprehensive questionnaire of history and symptoms with follow up questionnaires as needed

Review of past medical records

Review of past labs and tests

Review of any data you have collected on your own, such as from activity trackers and pedometers

A thorough physical exam

A 1 hour interview, in-person or over Google Meet

Educational resources about the nature of CFS and how Dr. Brown’s treatment protocol works

A formal written report with diagnosis, evidence supporting the diagnosis and recommendations for further workup which you can share with your treatment team

A treatment plan overview, including a list of root causes to focus on and general guidelines for treatment. You can take these recommendations to your primary care physician, another functional medicine provider, or continue your treatment with me in the next phase. 

A 1 hour virtual or in-person appointment to discuss the treatment roadmap and answer questions

Phase 2 - Ongoing Treatment

This is the phase Dr. Brown will take ownership of your treatment. Following the treatment plan created in phase 1, she will write prescriptions, recommend supplements, advise lifestyle changes, etc. 

Phase 2 includes:

Ongoing treatment and prescription medication management.

Follow up appointments as needed. 

Between-appointment access to Dr. Brown via email.

Access to Dr. Brown’s group sessions on important CFS topics such as pacing, mindset, meditation, and common pitfalls with Q&A at the end.

Phase 3 - Post-treatment Follow Up

In order to grow my understanding of how to treat CFS, I would like to follow up with you long-term even after you no longer need or desire follow up appointments for disease or medication management. I'm keen to know if you found my recommendations helpful or unhelpful, if you went into remission or stayed sick.

If you get better, I would love to check in with you every year or so to make sure you stay better.

If you do not improve or only achieve partial improvement, I would like to continue to follow you closely. I will provide new recommendations as my knowledge grows. If you find something that helps you that I did not recommend, I would love to hear about it!

Phase 3 includes:

Follow up interviews every 3 to 6 months to assess your progress and workshop problems until you are fully recovered. Once symptom free, I would like to continue to check in by email once per year to make sure symptoms do not return.

If you do not fully recover with the treatment plan provided, I will continue to follow up with you at least every 3-6 months. During these follow ups I will gather from you any new treatments you have tried and if it worked or didn’t work. I will also make you aware of new relevant recommendations as I learn about them. These follow ups will be a combination of phone interview and questionnaire.