Letter from Dr. Charles Lapp of Hunter-Hopkins

[AngelM]

I hope it is not out of line for me to share the letter I received today from Dr. Charles Lapp of the Hunter-Hopkins Center in NC. I am flattered that this great CFS researcher and fine physician (at the behest of a mutual acquaintance) took time from his busy schedule to write and personally
address an issue I have struggled with for many years. He clarifies a great deal for me. I’m hoping forum members might help me better understand the tests he recommends. And, hopefully, his kind words and recommendations will be of help to others, as well.


Angela,
You ask a very good question: ‘when severe anxiety disorder is present, can you distinguish Chronic Fatigue Syndrome because the symptoms are so similar.’

The answer is, “It’s difficult.” However, there are characteristics that tend to differentiate the two:

Anxiety tends to be more of a lifelong disorder, whereas ME/CFS more frequently has a more distinct and recent onset.

Anxiety frequently responds modestly to medication such as benzodiazepines, while ME/CFS does not.

The severity of symptoms such a pain, fatigue, non-restorative sleep, upright intolerance are more severe in ME/CFS whereas “worry” tends to be more severe in anxiety.

Anxiety is not usually associated with the symptoms of recurrent fever, sore throat, and swollen glands.

Anxiety tends to paralyze the patient with symptoms, who may be withdrawn, whereas persons with ME/CFS are pro-active and even energized but exhausted.

From a biochemical standpoint, we would see low white cell and Natural Killer Cell counts, elevated LDL levels, low IgG, elevated CD8/CD38 cells, possibly a higher prevalence of DR3, DR4, DQ1 and DQ3 alleles, abnormal MRIs, and distinctive QEEGs or SPECT scans.

So you see, a careful history and examination can help discriminate the two. I hope this helps!


Charles W. Lapp, MD But
Hunter-Hopkins Center

7421 Carmel Executive Park, Ste 320

Charlotte, North Carolina 28226

Tel 704.543.9692 Fax 704.543.8547

Web: drlapp.com


…specializing in fibromyalgia, chronic fatigue syndrome, and related conditions.




Virus-free. www.avg.com

 

[Tally]

Really good answer, thanks for sharing.

A few of my own thoughts:

Benzodiazepines do help people with ME/CFS.

Klonopin and Ativan are very commonly used when moving severely ill patients around because they are central nervous system depressants and help with sensory overload. Some people take small doses for sleep as well. To be fair, they don't help with any other symptoms in ME/CFS.

I think maybe the most important thing to mention would be that anxiety doesn't cause post-exertional malaise.

One thing that confused me is his list of abnormalities found in people with ME/CFS. I never heard of pwme having low white cell and Natural Killer Cell counts. I know NKC function is depressed, but never heard that their low number is common finding. Don't most pwme also have normal MRIs? Elevated LDL? Never heard of that either. Low IgG?

Don't pwme have all these in normal ranges most of the time?

Isn't that why we weren't believed for the longest time?

 

[AngelM]

One thing that confused me is his list of abnormalities found in people with ME/CFS. I never heard of pwme having low white cell and Natural Killer Cell counts. I know NKC function is depressed, but never heard that their low number is common finding. Don't most pwme also have normal MRIs? Elevated LDL? Never heard of that either. Low IgG?

Don't pwme have all these in normal ranges most of the time?

Isn't that why we weren't believed for the longest time?

I was confused, as well. Not sure whether the tests indicate anxiety or ME. I’ve never heard of a chemical finding for anxiety. But Dr. Lapp might be saying that these tests would eliminate other causes? Don’t want to reply with, “Could you elaborate.” At least until I have studied these lab tests more fully. I was wondering about the MRI’s the doctor mentioned. I have had numerous brain MRI’s because, as a result of serious head trauma as a child, I developed Normal Pressure Hydrcephalus. There are no symptoms, but I can’t help wonder if NPH is in any way related to CFS. Everything I have read says No! But since I have copies of MRI’s taken over a several decades, I would like for a CFS-savvy neurologist to have a look at them.

 

[valentinelynx]

One thing that confused me is his list of abnormalities found in people with ME/CFS. I never heard of pwme having low white cell and Natural Killer Cell counts. I know NKC function is depressed, but never heard that their low number is common finding. Don't most pwme also have normal MRIs? Elevated LDL? Never heard of that either. Low IgG?

Don't pwme have all these in normal ranges most of the time?

Isn't that why we weren't believed for the longest time?

I don't know about frequency of these findings, but from my own experience, once I found a doctor who would test for these things, I did have:
• Low NK cell count as well as function
• Low B cells
• low IgG

There are also studies finding MRI changes associated with ME/CFS.

It's not that PWME don't have abnormal labs. It's more that the right labs are rarely ordered. Natural killer cell number and function, B cell counts and immunoglobulin levels are not standard lab tests. A typical primary care doctor faced with the vague symptoms of an ME/CFS patient would order a complete blood count, a basic metabolic panel and perhaps thyroid function. All of these are likely to be normal. You can have low B cells and low NK cells and have a perfectly normal white blood cell count. And the MRI findings would be read by your typical radiologist as not significant, because they are not widely known to be associated with a particular disease. It is only when ME/CFS patients are studied specifically that specific abnormalities would be detected.

 

[AngelM]

There are also studies finding MRI changes associated with ME/CFS.

And the MRI findings would be read by your typical radiologist as not significant, because they are not widely known to be associated with a particular disease. It is only when ME/CFS patients are studied specifically that specific abnormalities would be detected.

I am curious about abnormal MRI findings in PWME. Aren’t most MRI’s tests of brain function, rather than other parts of the body? Seems like CT scans are used more routinely than MRI’s unless a symptom is obviously neurological in nature. Therefore, when I hear “MRI findings” I automatically think of the brain. And my experience with neurologists is that they disregard minor brain abnormalities found during MRI as being functional unless that finding is indicative of a neurological disease with which they are familiar, or one in which they specialize. It seems illogical to me that the brain function in PWME would read the same as the general population. Plus I doubt that any physician would order an MRI for a patient who presents with the cocktail of symptoms presented by PWME. Don’t know if this is true world-wide, but in America there is currently a shortage of neurologists, and getting an appointment with a good neurologist, particularly one with an understanding of, or interest in CFS, is extremely difficult. Could you possibly direct me to any neurological studies currently being done on PWME?

 

[Tally]

It's not that PWME don't have abnormal labs. It's more that the right labs are rarely ordered. Natural killer cell number and function, B cell counts and immunoglobulin levels are not standard lab tests. A typical primary care doctor faced with the vague symptoms of an ME/CFS patient would order a complete blood count, a basic metabolic panel and perhaps thyroid function.

I have seen more than 15 specialists over a decade I've been sick and ALL my test results are normal despite being severely affected.

80% of people with ME are unable to work. None of those is going to stop looking after just seeing a GP.

I know there are tests that show abnormalities, but they are only available as part of medical research. There's not a single place in my country, nor anywhere I can send my blood to, that can test for NK cell function.

I know there may be some rare places in the US but majority of patients with ME simply don't have access to those, so all we have to show after years of illness are piles of normal tests results.

Btw, my brain MRIs, IgG, and counts of all immune cells they could do in the biggest lab in the country, have all been perfectly normal.

 

[valentinelynx]

I am curious about abnormal MRI findings in PWME. Aren’t most MRI’s tests of brain function, rather than other parts of the body? Seems like CT scans are used more routinely than MRI’s unless a symptom is obviously neurological in nature. Therefore, when I hear “MRI findings” I automatically think of the brain. And my experience with neurologists is that they disregard minor brain abnormalities found during MRI as being functional unless that finding is indicative of a neurological disease with which they are familiar, or one in which they specialize. It seems illogical to me that the brain function in PWME would read the same as the general population. Plus I doubt that any physician would order an MRI for a patient who presents with the cocktail of symptoms presented by PWME. Don’t know if this is true world-wide, but in America there is currently a shortage of neurologists, and getting an appointment with a good neurologist, particularly one with an understanding of, or interest in CFS, is extremely difficult. Could you possibly direct me to any neurological studies currently being done on PWME?

Brief reply to some of your questions. MRI's are studies of structure not function (except for fMRI which is used for research and does study actual brain activity). MRI's are most commonly ordered to look for problems in the spine (in other words, for back pain) or in joints (usually the knee or hip). Yes, most abnormalities are disregarded unless well associated with specific diseases. Sorry, I cannot currently remember whether there's someone currently studying the neurology of ME/CFS... There's something on the tip of my brain, so to speak, but my memory fails me at the moment...