A Guide to Navigating the Medical System With Post-Acute COVID-19 Syndrome (PACS)

Sadly, as COVID-19 continues its devastating course, many are left in the wake with debilitating chronic illnesses. Their immune systems respond in a way to COVID-19 that leaves them with Post-Acute COVID-19 Syndrome (PACS for short). For whatever reason, COVID-19 has a penchant for initiating the overactive immune system response that leads to post-viral illness.

There are many people with PACS and other post-viral syndromes that don’t know where to start in navigating the medical system. I feel deeply for this struggle because I went through it myself. I hope this information serves as a guide for both PACS and other post-viral patients.

Note- PACS can mean that someone has a form of Dysautonomia (ex. POTS), ME/CFS, something else, or a combination of these factors. It seems that most PACS patients have Dysautonomia or ME/CFS, so I narrow in on those conditions.

Disclaimer- This article is based around the medical system and clinics in the United States.

Update- PACS is now called PASC: Post-Acute Sequelae of COVID-19. Excuse me while I google what sequelae means.

Step 1- Basic check-up to rule out many serious conditions

• Make a list of your symptoms and bring them to your primary care doctor to rule out certain serious conditions that can happen after viruses like COVID-19 (ex. heart inflammation).

Step 2- Make an appointment at a PACS clinic

• If you have a different type of post-viral illness (not PACS), skip this step.
• If you live near or have access physicians that specialize in PACS, visit them. An example would be the PACS clinic at Stanford. It also looks like Dartmouth has a PACS Clinic. According to this article, 44 hospitals have launched PACS clinics. I’m not sure how accurate that list is, but it could be a useful tool in knowing where to inquire first.
• If you get into a PACS clinic and are getting quality care, you do not need to look any farther as they can address the complexities of PACS.
• Continue to Step 3 if you do not have access to a PACS clinic.

Step 3- Get tested for Dysautonomia

• Ask your doctor for a tilt table test/autonomic testing to identify forms of Dysautonomia like POTS and Orthostatic Hypotension. It is currently estimated that 50% of PACS patients have a form of Dysautonomia.
• You may also perform a “poor man’s tilt table test” for your own curiosity’s sake. This may be used to demonstrate to your doctor that you need a tilt table test if they were previously hesitant.
• If you have Dysautonomia, go to step 4. If not, proceed to step 5.

Step 4- What to do if you have Dysautonomia

• If you have Dysautonomia, find a specialist near you. Specialists in Dysautonomia are usually Cardiologists or Neurologists. However, not all Cardiologists and Neurologists are familiar with Dysautonomia, so you really have to be sure that they have an interest or specialty in it.
• If you cannot find a specialist near you, get a telemedicine appointment with neurologist Dr. Svetlana Blitshteyn. She will give you recommendations which you share with your primary care doctor who will do that actual prescribing.
• Visit my page of List of all Posts and read the ones that may apply to your situation. There is a lot that can be done aside from the medication that a doctor prescribes.
• Make sure that the physician you choose rules out conditions that exacerbate or mimic POTS and other forms of Dysautonomia. You can check out my article Test to Consider if You Have POTS to learn more about this.

Step 5- What to do if you don’t have Dysautonomia and all of your other tests are normal

• If you haven’t received any diagnoses at this point and debilitating fatigue is one of your chief complaints, you may want to look more into ME/CFS. It is primarily a diagnosis of exclusion, so it can be tricky. However, if you go to the correct places, you can get diagnosed and treated for it.
• I recommend visiting a ME/CFS specialist.
• Make sure that the specialist you see tests for things that exacerbate or mimic ME/CFS. You can check out my article on Tests to Consider if you have ME/CFS to learn more about this.

Step 6- What to do if you’re stuck and cannot get any specialists to work with you

• This is where you have reached dead ends everywhere, have a “clean bill of health”, doctors will not work with you, you can’t get evaluated for ME/CFS, but you still have symptoms that sound like ME/CFS.
• This article from MEAction Network describes the diagnostic criteria of ME/CFS.
• Visit my page List of all posts. Read through any articles that are relevant and apply what you can.
• Visit the Health Rising site. Cort Johnson provides the most up-to-date information on treatments and research for ME/CFS.
• Check out the MEAction Network site. They are an excellent resource on ME/CFS.

Beware of…

Beware of scams. There are many companies and “practitioners” that are full of crap. If it seems sketchy to you, run.

Also beware of bad doctors. See my article on Green Flags and Red Flags for more about this.

Encouragement

This is 100% out of context, but you get my point. Don’t give up on your health. There are many ups and downs through the process of diagnosis, treatment, and navigating the healthcare system. However, there is a lot of hope as advancements in the field of post-viral illnesses continue to grow exponentially. Feel free to e-mail me at dropitlikeitspotsblog@gmail.com if you could use some support/advice/sounding board etc.

Do you have PACS or another type of post-viral illness? What tips do you have for other PACS/post-viral patients?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.