Clinics or Doctors in the US for early CFS diagnosis & treatment & to rule out non-CFS diseases?

[junkcrap50]

I have an interesting situation that many people with CFS don't experience: diagnosing and catching CFS very early in its progression.

A friend of the family has asked us to help their kid who seems to have CFS or is in the very early stages of it. From what I know, his history/illness presents like this:

-Concussion with post concussion syndrome symptoms (which he apparently recovered from)
-EBV infection (not long ago, from which he is now still sick)
-Depression and brain inflammation
-Fatigue
-Not himself anymore

Now, I understand this does not mean he has CFS/ME. I don't have the entire history/picture. Or any labs or what other doctors have said. His family seems like they are desperate and that his "illness" started with his EBV infection. There are lots of directions I can point them to, but I would like for them to be aware of and understand CFS as that can save tons of time and expense for them. Also, from what i understand, if the CFS is caught and treated aggressively early, patients are more likely to be cured.

I am going to start by sending them literature about CFS and the many criteria and definitions to see if they meet more of them. But I would also like to provide some doctors and clinics that they might put in appointments in now because of the long waiting list.

What would be some good doctors and clinics as a starting point for them? They are considering the Amen clinic as they believe it is all head injury related (which it may be). But I'd rather they rule out or treat CFS first.

I have come up with a list below:
Dan Peterson (because he does thorough testing and looks beyond just CFS and is very aggressive with antivirals)
Neil Nathan
David Kaufman
Bela Chheda
Jose Montoya
Lucinda Batement
Susan Levine
Nancy Klimas

Does anyone know of any other good doctors? I'm going to have them go to their own, local infectious disease doctor for thorough testing first obviously.

I would also be very appreciative if any knows of some "tried-and-true" CFS review papers that are popular for educating people on CFS.

What would you do if you had an early case of CFS and know everything you do now?

 

[Sushi]

I have come up with a list below:

Unfortunately quite a few of those doctors don't take new patients...or have a waiting list of several years.

 

[Learner1]

I'd suggest a good functional medicine doctor or naturopathic doctor. My functional medicine naturopathic doctor knew to order all the right labs to point me in a direction before I got to a top specialist out of state who was able to confirm my diagnosis and dig more deeply into his expertise to help me.

I'd also been to over a dozen MDs of various types in my major US city who were utterly unable to help or even read my labs and know what to do with them.

 

[CFS_for_19_years]

What would be some good doctors and clinics as a starting point for them? They are considering the Amen clinic as they believe it is all head injury related (which it may be). But I'd rather they rule out or treat CFS first.

IMHO If he is suffering from traumatic brain injury from a concussion, this should be ruled out before a CFS diagnosis is given. The concussion has the ability to upset the HPA axis and cause decreased release of all hormones.

Endocrine changes after pediatric traumatic brain injury
https://www.ncbi.nlm.nih.gov/pubmed/22057966
2012

Full text:
http://sci-hub.la/10.1007/s11102-011-0360-x

Traumatic brain injury (TBI) is a very common occurrence in childhood, and can lead to devastating long term consequences. Recent research has focused on the potential endocrine consequences of TBI in adults. The research in children is less robust. This paper reviews current literature regarding TBI and possible hypothalamic and pituitary deficiencies in childhood.

Acute endocrine changes are commonly found after TBI in pediatric patients, which can include changes in hypothalamic-pituitary-adrenal axis and antidiuretic hormone production and release. In the long term, both temporary and permanent alterations in pituitary function have been found. About 30% of children have hypopituitarism up to 5 years after injury. Growth hormone deficiency and disturbances in puberty are the most common, but children can also experience ACTH deficiency, diabetes insipidus, central hypothyroidism, and elevated prolactin.

Every hormonal axis can be affected after TBI in children, although growth hormone deficiency and alterations in puberty are the most common. Because transient and permanent hypopituitarism is common after TBI, survivors should be screened serially for possible endocrine disturbances. These children should undergo routine surveillance at least 1 year after injury to ensure early detection of deficiencies in hormonal production in order to permit normal growth and development.

Update of Endocrine Dysfunction following Pediatric Traumatic Brain Injury
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4555075/
2015

Traumatic brain injuries (TBI) are common occurrences in childhood, often resulting in long term, life altering consequences. Research into endocrine sequelae following injury has gained attention; however, there are few studies in children. This paper reviews the pathophysiology and current literature documenting risk for endocrine dysfunction in children suffering from TBI.

Primary injury following TBI often results in disruption of the hypothalamic-pituitary-adrenal axis and antidiuretic hormone production and release, with implications for both acute management and survival. Secondary injuries, occurring hours to weeks after TBI, result in both temporary and permanent alterations in pituitary function. At five years after moderate to severe TBI, nearly 30% of children suffer from hypopituitarism.

Growth hormone deficiency and disturbances in puberty are the most common; however, any part of the hypothalamic-pituitary axis can be affected. In addition, endocrine abnormalities can improve or worsen with time, having a significant impact on children’s quality of life both acutely and chronically.

Since primary and secondary injuries from TBI commonly result in transient or permanent hypopituitarism, we conclude that survivors should undergo serial screening for possible endocrine disturbances. High indices of suspicion for life threatening endocrine deficiencies should be maintained during acute care. Additionally, survivors of TBI should undergo endocrine surveillance by 6–12 months after injury, and then yearly, to ensure early detection of deficiencies in hormonal production that can substantially influence growth, puberty and quality of life.

He might even have both CFS and TBI, but it seems like follow-up care for the concussion is very important. In any case, he will have cognitive problems and a need for rest.

 

[1gooddog]

When researching any chronic condition trying to find answers, arguing with MDs that I am depressed because I feel like total crap. Years and years of specialists and testing to rule everything out, more than once, and still no formal dx other than the first doc in 2008, a teaching rheumatologist who believed FM and CFS existed. the rest of my medical community deriding that early dx ( I was dx with EBV twice in my early life), I have discovered the US to be years behind European countries in research, recognition and diagnosis.

I recently found "Department of Internal Medicine and Expert Center for Chronic Fatigue (ECCF) of the RadboudUMC, Nijmegen, the Netherlands", which seems to be doing some promising work in this area. When I was first dx in grade school, EBV was called glandular fever. When I was dx at 19 they called it Mononucleosis.

On Tuesday researching phages from some unrelated article, I put two and two together - phages and choline and was eventually led to above referenced site. It made so much sense. I have read that anti-virals have very limited effect. The Netherlands has used anakinra with some success. I am now 70, I have been bed ridden for most of 2018 and won't even go into the past 10 years of remission (not total) and relapse, (more frequent and lasting longer with less of a rebound), resulting depressing, and the US medical community being so unwilling to dx CFS.

 

[1gooddog]

Without any diagnostic for CFS, how do you know you have an "early case of CFS" without ruling everything else out, that could be deadly. At least for CFS patients, the mortality prognosis is good knowing you don't have any other problems, or if so they are being properly managed. I have been through so many tests and scans, at least 3 times each - that a long life looks promising. However, it will be difficult to enjoy.

With every possibility I have faced I have researched and learned more than the doctors know - at least in the US. I am 70 and again sinking into a deep depression, with a very supportive and caring Christian husband.

 

[Rufous McKinney]

I just read Minnesota is getting a new virtual (?) ME CFS clinic for uninsured and underinsured folks.

https://www.mecfsclinicmn.org/resources

under resources, two support groups are listed.

This web site is not listed there. but its a form of support...

Also, a Go Fund Me was set up to accept donations to this clinic...

https://www.gofundme.com/f/mns-firs...ource=twitter&utm_campaign=p_lico+share-sheet