Klimas Conference Video 4: The Basics of Treating CFS/ME and GWI

April 10, 2013

Jody Smith continues her review of INIM’s Patient Conference with a look at Dr Irma Rey’s presentation.

pixabay-red-blood-cells

In the fourth video of the Institute for Neuro Immune Medicine’s Patient Conference in January, Dr. Klimas introduced Dr. Irma Rey, Assistant Professor of Medicine, of the Department of Clinical Immunology. Dr. Rey is also Director of Medical Education, Nova Southeastern University, College of Osteopathic Medicine, Institute of Neuro-Immune Medicine.

Without Dr. Rey, none of what is happening at NSU for Chronic Fatigue Syndrome and Gulf War Illness would be possible, Dr. Klimas said.

Lymphocytes the main focus of study

Dr. Rey said that lymphocytes are the main focus of study. She explained a little bit about the blood tests that are taken, displaying the information on the screen.

  • The blood tests reflect the overall immune system, though 95 percent of the immune system is in the tissues (lymph nodes, spleen, skin and gut).
  • White blood cells start out as stem cells in the bone marrow, and they learn their “destiny” as they travel through the body to the thymus and liver.
  • Part of the immune system stem cells are composed of lymphocytes. Lymphocytes are the main focus of immune studies in CFS/ME and GWI.
  • Cytotoxic T cells and NK cells prevent viruses from reactivating and kill tumor cells to prevent cancer.

An Immunologic and Biologic Illness

Dr. Rey described CFS/ME as an immunologic and biologic illness. She reported that CFS/ME patients have lower than normal NK cell activity. She described Natural Killer cells as the SWAT team of the immune system, on the lookout for invaders like tumors or viruses.

Dr. Rey said that she is always looking for markers for things that can be treated. They make a practice of testing for the following viruses:

  • Parvo B 19, also called Fifth Disease
  • CMV, similar to mononucleosis
  • EBV (mono) also called HHV 4
  • HHV 6 (roseola)
  • Coxsackie B (Hand, Foot & Mouth)

Sleep and Endocrine Disorders

CFS/ME is associated with sleep disorders, as well as endocrine disorders such as thyroid, adrenal, pituitary and sex organ problems. Dr. Rey said that just treating one aspect of the syndrome doesn’t help much. If you don’t address all components, it’s hard to bring any improvement.

Cognitive dysfunction includes memory problems, difficulty concentrating and processing thought.

Autonomic disorders involve abnormalities in blood pressure, heart rate and temperature. When you push the autonomics, Dr. Rey observed, the disease in general seems to get worse.

Mood disorders can accompany this illness. Dr. Rey emphasized that mood disorders may result just because of the loss of so many aspects of a patient’s past life.

Sleep disorders can include:

  • Sleep apnea, even if the body mass index (BMI) is normal. This may be due to fatigue of neck muscles.
  • REM abnormalities
  • Restless leg syndrome

Endocrine abnormalities include:

  • Thyroid nodules
  • Hashimoto’s disease
  • Under functioning thyroid gland
  • Adrenal fatigue
  • Irregular menstrual periods
  • Absent menstrual periods
  • Abnormalities in estrogen and progesterone production, endometriosis, polycystic ovaries syndrome, and uterine fibroids
  • In men, low testosterone levels, even in young men
  • Pituitary evaluation is necessary if there are abnormalities in the adrenal axis

CDC Criteria for CFS

Dr. Rey put the CDC Criteria for Chronic Fatigue Syndrome up on the screen:

The individual has had severe chronic fatigue for 6 or more consecutive months that is not due to ongoing exertion or other medical conditions associated with fatigue. The individual concurrently has 4 or more of the following 8 symptoms (CDC: 2012)

  • Post-exertion malaise lasting more than 24 hours
  • Unrefreshing sleep
  • Significant impairment of short-term memory or concentration
  • Pain in the joints without swelling
  • Headaches of new type, pattern or severity
  • Muscle pain
  • Tender lymph nodes in the neck or armpit
  • A sore throat that is frequent or recurring

Immune Cells and Lymphocytes

Dr. Rey moved on to a screen that read Meet The Cells of Immune System:

  • Natural Killer Cell
  • Macrophage
  • T-Lymphocyte
  • Lymphocyte
  • Dendritic Cells

Then it was on to the Members of the Lymphocyte Family:

  • Helper/Inducer cells start the immune response
  • B cells make antibodies
  • NK cells kill virally infected cells and cancer cells
  • T cells include CD4 (helper cells), CD8 (cytotoxic T cells) and T-reg cells
  • Cytotoxic T cells kill infected cells and cancer cells

Immunologic and Virologic Testing

Dr. Rey went next to a screen about Immunologic/Virologic Testing checks:

  • Numbers of CD4 cells and percents
  • Types – what kinds of cells and their purpose
  • Function – do they work? In vitro testing
  • Infection – survey of possible reactivated viruses or chronic infection

Information Immunologic Testing:

Products: Cytokines are messenger proteins made by the cells. Some cause inflammation, others help the cells with antiviral or antibody production. Some are anti-inflammatory

Numbers: T cells, B cells, NK cells and their activity state of mind — activated or quiet, memory or naive

Function: NK cell function tests the ability to clear virally infected cells and cancer cells

The NK Cell Diet

Dr. Rey gave some information about the recommended Natural Killer Cell Diet:

Step 1:

Week 1 – 50 mg CoQ10, 1000 mg omega-3 fatty acids, 500 mg vitamin C, for vitamin D3 levels should be checked because D3 is fat soluble and it may be possible to have too much, vitamin B12 levels should also be checked.

Week 2 – 100 mg CoQ10, 2000 mg omega-3 fatty acids, 1000 mg vitamin C, vitamin D3 and B12 levels should be checked.

Week 3 – 150 mg CoQ10, 3000 mg omega-3 fatty acids, 1500 mg vitamin C, vitamin D3 and B12 levels should be checked because anything under 400 could indicate neuropathic problems.

Week 4 – 250 mg CoQ10, 4000 mg omega-3 fatty acids, 2000 mg vitamin C, vitamin D3 and B12 levels should be checked.

Step 2:

Dr. Rey said that this information was not up on the screen because they discourage people trying to treat themselves with Immunovir due to its possible side effects. They start first with things that cause the least amount of side effects, which are the antioxidants.

Step 2 includes amino acids, and Inosine or Immunovir.

Step 3:

Studies have indicated it can be beneficail to use antivirals for treating the herpes family viruses.

Famvir, Zovirax or Valtrex, Equilibrant and Valcyte may be prescribed.

Dr. Rey recommends that people start supplements in small amounts and slowly increase, because most CFS/ME patients have a hard time processing medicines.

In the beginning she and Dr. Klimas were starting all supplements at once and almost 100 percent of their patients couldn’t handle it. She suspects that it is due to our lack of detoxification pathways. Starting slowly allows the body to metabolize supplements more easily and tolerate the doses.

She repeated something that Dr. Klimas said on an earlier video. “If it’s making you sick, stop. Let us know that you stopped … so we can make correction in the middle of your treatment. However it’s important to try to take it even if we have to go up very slowly, every other week, every three weeks, every month, whatever is required is what we recommend doing.”

Dr. Rey showed a short video on Natural Killer Cells. “I wanted to let you know how much I’m in love with the Natural Killer cells [laughter from the audience] and how much I want to try to help them do their work for you. Thanks for listening.”

Further Reading

NSU Will Host Patient Conference for Dr. Nancy Klimas on Jan 26 (Phoenix Rising)

A Celebration of Hope and Progress (Phoenix Rising)

Klimas Conference Videos 1 and 2: INIM’s Big Plan (Phoenix Rising)

Welcome and Introducing the INIM (Nova Southeastern University)

INIM’s Big Plan: Finding Effective Therapy for GWI, CFS/ME and Complex Medical Illnesses (Nova Southeastern University)

Patient Conference videos (Nova Southeastern University)

ME-CFS Knowledge Center

 

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7 comments

{ 7 comments… read them below or add one }

kday April 10, 2013 at 10:02 pm

I don't understand why she only focuses on viruses.

kday April 10, 2013 at 10:11 pm

This is the problem I see. This is a syndrome involving a compromised immune system. In many, if not most cases, viruses, bacteria, and parasites may be implicated.

I go to a CFS specialist, and they are only interested in looking at viruses. I go to an infectious disease doctor, and they aren't interested in looking at anything. So you have to navigate out of mainstream and find a "Lyme" doctor that treats the many chronic and opportunistic bacterial infections.

What we really need is chronic infectious disease doctors or something along those lines.

Tristen April 11, 2013 at 2:13 pm

"When you push the autonomics, Dr. Rey observed, the disease in general seems to get worse".

This is precisely what happens to me when I take ANY meds (as well as other stressors) that push my system. This is why I can't take any of the known stimulant meds that some PwME seem to benefit from. I can't even take cortisol at low doses without a crash, even though my labs show sub-clinical levels.

Thanks for posting.

Jody April 11, 2013 at 3:18 pm

You're welcome, Tristen.:)

I am the same way — not as extremely as I used to be, but anything new, supplements or anything else in life, has to be started in ridiculously tiny doses. First time going for a walk after a long crash, is 5 minutes, then not again for a few days. New supplements are half the normal, and once a day not twice or three times. Learning to go for such tiny increments my body doesn't seem to notice, has been key for me. Very slowly, with only subtle increases, eventually I can get somewhere. But it has to start at a snail's pace. A snail with CFS.

Helen April 24, 2013 at 1:39 am
Tristen

"When you push the autonomics, Dr. Rey observed, the disease in general seems to get worse".

This is precisely what happens to me when I take ANY meds (as well as other stressors) that push my system. This is why I can't take any of the known stimulant meds that some PwME seem to benefit from. I can't even take cortisol at low doses without a crash, even though my labs show sub-clinical levels.

Thanks for posting.

Maybe you have a CYP3A4 polymorphism? If you miss that enzyme you can´t metabolize 50-60% of all medicins (check even herbes) including cortison meds normally. The snip is analyzed in a 23andme test. A friend of mine with ME/CFS who reacts on almost everything now can explain most of the reactions when she knows her genetics in methylation and in the livers Phase 1 and 2 detoxification.
I have the CYP3A4 mutation too. Bad, but at least good to know. Doctors take it seriously.
The meds you can´t tolerate with a CYP3A4 mutation are listed in a testresult as an example from Genovation here
(Liqourice slow down the metabolizing of cortisol that you produce, so it stays longer in the body. Might help you if you can´t take cortison. Recommend you to study this before trying as it affects the blood pressure – maybe you already knew this).

globalpilot April 24, 2013 at 5:49 am
Helen
Maybe you have a CYP3A4 polymorphism? If you miss that enzyme you can´t metabolize 50-60% of all medicins (check even herbes) including cortison meds normally. The snip is analyzed in a 23andme test. A friend of mine with ME/CFS who reacts on almost everything now can explain most of the reactions when she knows her genetics in methylation and in the livers Phase 1 and 2 detoxification.
I have the CYP3A4 mutation too. Bad, but at least good to know. Doctors take it seriously.
The meds you can´t tolerate with a CYP3A4 mutation are listed in a testresult as an example from Genovation here
(Liqourice slow down the metabolizing of cortisol that you produce, so it stays longer in the body. Might help you if you can´t take cortison. Recommend you to study this before trying as it affects the blood pressure – maybe you already knew this).

Interesting. There are 50 or so cyp3a4 genes on 23andme. What would one look for ?

Helen April 24, 2013 at 6:25 am
globalpilot

Interesting. There are 50 or so cyp3a4 genes on 23andme. What would one look for ?

Good question :). I had the analyse from Genovation. I tried the link under internet information after CYP3A4 in the test result but it didn´t work. I suppose the only way is to ask Genovation which snip they analyse.

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