(Later questions revealed that Beverly also has major sleep and pain problems. She was in two car accidents over two years but her pain was mostly under control until she came down with ME/CFS/FM after a respiratory infection in Oct, 2010. Since then she’s gone downhill rapidly and is now at a functional level of three. Interestingly, she also had a difficult to recover from case of mononucleosis which caused to repeat a year in high school.  Her EBV IgM levels are not positive but high IgG titers could indicate EBV reactivation. She clearly has a reactivated CMV infection and hyperparathyroidism is a possibility).

Gender – Female Duration of Illness – 3-5 years Co-Morbid Disorders – ME/CFS, FM and MigraineFunctional Level  – 3 – usually confined to house

Test Results You Think May Apply

• CMV Ab,IgG 10.4 with reference range Positive = 0.69
• CMV Ab,IgM 8.0 with reference range Positive = 1.0
• EBV Ab,IgM – My most recent labwork (Feb 2014) was done through LabCorp and says my EBV IgM < 0.2
  My previous labwork (2 separate ones Aug 2012 and Feb 2012) were done through Quest and doesn’t give a number result, only that it is Negative.  Says:   < OR = 0.90

Drugs You’re Currently Taking

• Baclofen 20mg 3x/day
• Acyclovir 400mg 2x/day
• Relpax 40mg as needed

I use Acupuncture and CranioSacral Therapy for pain relief and healing, and Chinese herbs as formulated by my Naturopath

Supplements You’re Currently Taking

Lysine, Zinc during breakout of mouth sores, krill oil, grape seed extract, Vitamin C, magnesium citrate, DHEA, Vitamin D3, Vitamin B12 complex, essiac tea. 

ME/CFS Experts Further Questions

Dr. Kaufman asked about her EBV results (not  given at  the time) and Dr. Bateman asked numerous questions which are given below with Beverly’s answers. All the experts were given the additional questions and answers.

1)  INFECTION: Does she have any place in her body that seems “infected”—sore throat, cough, sinuses, etc., and what are the symptoms?

Yes.  My illness seemed to start with an upper respiratory virus in October 2010 and had a lingering cough off and on for 5 months (never went to the doctor though, my adult son had the same thing with the same symptoms and “lingering” effects, we just doctored ourselves at home), followed by Fibromyalgia symptoms setting in (all over body aches and pains, extreme fatigue, tender points, etc) February 2011.  To date, I continue to have a cough, usually dry, sometimes wet, but always consistently at night about a 1/2 hour after I lay down to sleep, and sometimes it will wake me from my sleep during the night.  I do have plans to ask my doctor for a chest xray when I see her end of May.

I have a constant sore throat – it gets better during the day. Assume it is a symptom of CFS. No signs of injection. It gets worse when I have a flare in the fatigue, after stress or too much activity. When I get the mouth sores, it sometimes feel like I have them in my throat too although I cannot see anything.

Historically I did have mono at age 15. I don’t remember exact dates, but it so interfered with my sophomore year of high school that I had to take an Incomplete and repeat the grade

The acyclovir has only helped minimize the outbreaks of canker sores in the mouth. I found this out after having been on it for one full year without any improvements in any symptoms, or so I thought. After having been off of it for 3 months and having constant breakouts of the mouth sores, I told my doctor and she put me back on it. It took a couple of months, but it seems to be helping again as I have not had a mouth sore in almost a month now (I have been back on it since January 2014).  I have not had any bad side effects from it. I take 400mg twice daily.

2) PAIN:  Where is her pain (details), when, and how severe is it?

Pain is head to toe. I will try to detail as follows:

Head: I always have a headache, ranging from mild to migraine. I wake up with it and it gets worse as I start moving. I attribute most of it to bulging discs in the neck. I got a mouthguard to wear at night which has helped the early morning headache, as I found myself clenching from pain during the night, but I still often wake around 3-4am with a headache.

I have a “barometer head” and am greatly affected by low pressure weather systems – always have been since my late teens.  If I lay on my back, so that I am on the back of my head, I will get a horrible headache that cannot be improved with any medication. Assuming it comes from the Occipital area of my head. Daily average pain is a 5

Neck/Shoulders: Pain from constant muscle spasms. Gets worse when using my arms such as sitting here typing, washing dishes, driving (which I rarely do), etc.  I do have disc herniations in the cervical spine. Daily average pain is a 7

Arms/Wrists/Hands: Pain from tight muscles. If I do any kind of exertion such as pick up my small dog (10 pounds) or carry a gallon of water, my biceps feel like they are on fire within a few hours but then settle down after some deep self-massage and 24 hours. I do have major trouble with my elbows in that if my arms are bent more than 90 degrees for more than a couple of minutes, I get tingling in the hands as well as severe elbow pain. Then when attempting to straighten the arm again, it feels like a vice is squeezing the elbow and the pain is excrutiating.

I get wrist pain from sitting here trying to type this and hand pain from typing or doing any kind of small movements, such as I am unable to peel/slice vegetables and have trouble buttoning clothing. Excrutiating pain if I have to drive where I have to grip the steering wheel.

I do have diagnosed arthritis in the hands. Early morning is the worst stiffness/pain for the hands.  I do have periods where I feel like I am flaring, and then my arms, hands and fingers ache deep into the bone, like they are in a vice, especially the areas below the elbow. Daily average pain is a 4

Mid-body: Immediately upon waking and continuing for about an hour, I feel like I have been a punching bag during the night. My ribcage (subcostal) feels bruised. This area is also quite tender at all times making it painful to wear a bra as well as a chiropractic adjustment bothers me (it didn’t used to).  Get a “cramp” in my mid-thoracic spine when I use my arms such as reaching upwards to wash hair, reaching forward to wash or put away dishes, hang up clothes, etc.  Daily average pain is a 5 (it is a 9 first thing in the morning)

Lumbar/Sacral/Hips: Constant excruciating pain, this is my most problematic area. I do have some bulging lumbar discs and one herniation (and DDD) from 2 car accidents in 2002 and 2009, but prior to March 2011 this pain was under control.

When the pain started up in 2011, I thought I had thrown something out of place by bad bouts of coughing with a virus for the past 5 months, but it has been unrelenting, with only brief (maximum 48 hours) relief from chiropractor, acupuncture, massage and/or craniosacral therapy or any combination thereof.

Pain pills don’t touch it, steriods and anti-inflammatories have not touched it. MRIs and Xrays have been done to rule out Ankylosing Spondylitis. I am unable to sit for more than 10 minutes (2-3 minutes on a hard chair) without worsening pain in the area. I am unable to lay flat on my back for more than 10-20 minutes without worsening pain in my sacral area.

I will say that I had a 3 day course of Cipro in March 2012 for a suspected UTI (culture came back negative) and my back was pain-free for these 3 days. Daily average pain is a 9.

Knees/Legs:  Muscles are tight even with stretching so that is where any pain comes from. Except for the achilles and calf areas – these areas are in a constant spasm. My massage therapist often finds that the 2 muscles in the calf are “stuck together” rather than supple and able to glide back and forth over each other.  This area is also worsened by walking or driving (driving is rare).  I do have periods where I feel like I am flaring and then, my lower legs ache deep into the bone, like they are in a vice. Daily average pain of knee/leg is a 2, but achilles/calf is a 5

Ankles/Feet:  My feet were actually one of my first complaints as a symptom in February 2011. I equated the pain to standing barefoot on hot pavement and having them burned on the bottom. This pain comes and goes, is not as often as it was in the beginning. My ankles and feet are in a constant spasm and feel like they need to crack. Sometimes I am able to “roll them” around and get them to crack. I have a history of plantar fascitis in one foot but this is a different kind of pain and the pain is also in the top of the foot, like things are just tight. I am unable to stand more than 5 minutes without worsening pain and extreme fatigue to the point of feeling faint.  Daily average pain is a 5

3) SLEEP: Can she describe her sleep issues, if any?  Sleep and napping patterns?

Night sleeping is a huge issue. I go to bed around 11pm but most nights lay there wide awake until at least 1am, on occasion 3-4am. I leave lights out and just listen to music or have white noise going on. I don’t feel that these noises keep me awake, because when I lay down for a nap, I often have the tv on and I zonk right out. No matter the time I get to sleep, I wake in 1-2 hour increments.  I do not work, so I generally sleep until my dog wakes me up around 8am.

Daytime napping: I used to lay down to rest around 10am, sometimes sleeping until 11am, forcing myself to get up.  Unfortunately this generally makes me feel even more fatigued, so sometimes I just push through and don’t sleep, just rest in a recliner.  I always lay down around 2pm and sleep until 4pm (I could probably sleep longer but force myself to get up so as not to interfere with night sleep). Again, do not feel rested.

During whatever time periods that I am asleep, I toss and turn from side to side due to pain in the neck and hip area. I have a very comfortable pillow-top bed with a 2″ memory foam and a thick down mattress cover.  I have trouble getting comfortable sleeping on my side, because along with the hip pain, I have shoulder pain and also try not to bend my arms due to the elbow problems, and I also cannot lay on my back due to sacral and head pain (all as stated above under the Pain section).

There have been a few nights very recently, and I cannot put my finger on anything, where I have laid on the couch and fallen asleep about 9pm. My dog will come and wake me up at 10pm to go outside. After letting her out, I will go to bed, but still wake in the 1-2 hour increments.

I have tried multiple remedies:  Advanced sleep aid from Vitamin Shoppe and Calms Forte – neither helped me get to sleep or stay asleep, but they did seem to help me get back to sleep faster on the times I woke to turn over. Even on the rare occasion I take a pain pill, it has the same effect on sleep as the aids. The one night that I sleep the best is the night after I have had an acupuncture treatment (which is only one treatment monthly due to financial constraints). On that night, I can go to bed at 11pm and sleep until 5-6am (with minimal turning side to side).

No matter the amount or quality of sleep, my body doesn’t seem to fully “wake up” until after 10-10:30am.  Odd thing is, I find it easier to fall asleep, and stay asleep, during the day than at night. I often wonder if I just let myself sleep when it wants to, what would that be like. Would you advise doing that? Is it more harmful than what I am currently living through?

4) EXERCISE: What happens when she tries to increase her activity level, such as start a walking program or do yoga?

I have tried to increase my activity level gently, such as slow walking on my treadmill for 3 minutes but I cannot go more than 2 days without an increase in severe fatigue. My Rheumatologist advised me to slow walk 5 minutes every other day 3x a week, but I just can’t manage that.

If I walk outside, I walk slowly about 3 blocks roundtrip but start losing my balance and can twist my ankle on the last half of the trip. (I am currently seeing a Neurologist to determine why I stumble/fall/stub toes).  I feel a “good tired” initially but then severe fatigue sets in about an hour later. It is rare that I walk outside though, due to the chances of twisting my ankle and getting stuck away from home, plus the heat/humidity here in Florida greatly fatigues me.

I very recently had a family member with a health issue so I HAD to travel to the Emergency Room on Sunday evening (stayed 2 hours plus 1 hour commute round trip (I was driven) which put me into such excruciating pain that I had to take a pain pill, then on Tuesday I had a dentist appointment followed by a Nerve Conduction Study at the Neurologist’s office.

Having these 2 “full days” back to back (activity as well as sensory overload) sent me into a tailspin to which I have not yet recovered (it has been 2 weeks). I feel “wired” and so extremely fatigued that I feel like I am dying on the inside. There is no improvement in my sleep pattern even though I am having a flare in the fatigue level, in fact it is worse.

I have not attempted yoga to any extent due to back pain and balance issues. I have attempted to use Therabands but it flares my neck pain. I do gentle stretching in bed as advised by my Rheumatologist. I try do daily “piddling” around in the yard, watering plants or watching birds and butterflies. As long as I pace myself and don’t exert, I can last about 20 minutes before I feel like I overdid things.

However I live in Florida and I am greatly affected by the heat and humidity that has now arrived for the season so my time outside is limited to early evening. I have tried to do mornings but the heat and humidity has as much effect on my fatigue as exercise does! Simply standing in the sun, or even in the shade (but still feeling humidity) wipes me out!

I try to accompany my daughter to the grocery store but find between getting in and out of the car, walking the aisles, being exposed to multiple smells/lights/sounds/people, I get greatly fatigued and need about 4-5 days to recover. I attempted to use the heated swimming pool at the neighborhood gym last year, going once a week and just “moving” arms and legs for 15-20 minutes, it felt really good while doing it, but afterward I was so drained for about 3-4 days, as well as I found I was super sensitive to the chlorine so I stopped going.

5) LABS:  I need clarification on her EBV IgG, IgM and CMV IgG and IgM and what they were in at least 2 points in time, preferably near the start of her illness and now.  I also need basic lab results like ESR, CBC, CMP, TSH, or to know they are normal.

Assumed onset of illness is 10/2/10 (my birthday, so I remember it well). Most major symptoms began February 2011.

EBV

• EBV first test at 12/29/11:  IGG >5.0 (range H),  IGM < or =.0.90 (range N)  EBNA IGG = 4.72 (range H),  Used Quest Labs
• EBV next test at 8/2/12:    IGG >5.0 (range H),  IGM < or =.0.90 (range N)   EBNA  IGG >5.00 (range H)  Used Quest Labs
• EBV last test at 2/5/14:     IGG >8.0 (flag H),     IGM <0.2 (range N)     EBNA not taken    Used LabCorp (due to insurance)

CMV

• CMV first test at 8/2/12: IGG 2.98 (H),   IGM 0.41 (N)
• CMV last test at 2/5/14: IGG 10.4 (H) ,  IGM <0.90 (N)

HSV

• HSV1 first (and only) test at 8/2/12: IGG >5.00 (range H),  IGM 1:20 (range H)
• HSV2 first (and only) test at 8/2/12: IGG  0.21 (range N),   IGM 1:20 (range H)

I also had some kind of weird illness in 10/31/07 (lots of pain and stomach problems-lasted about 6 weeks) and labs showed Parvovirus B19 IGG 5.8 (H), and IGM 0.2 (N).
Historically I had Scarletina has an infant, and Mono at age 15. My mother has Lupus, Raynaud’s and Autoimmune Hepatitis but multiple testing reveals no signs of Lupus in me.  CRP, ESR and ANA always come back negative/normal

Basic labs: ESR, CBC, CMP, TSH

• 5/5/11:  CRP 0.42 (N), ESR 11 (N), RF 8 (N) CCP IGG 19 (N, weak positive starts at 20),
• 4/5/12:  CRP 0.31 (N), TSH 3.24 (N)
• 11/8/12: CRP 0.26 (N), ESR 8 (N), TSH 3.68 (N)
• 7/3/13:   ESR 11 (N)
• 2/5/14:   ESR 3 (N)  *Note had been on Methylprednisolone since 11/13,   CRP  3.0 (N)

ALL CBCs and CMPs have been normal except at 2/5/14 when:

• WBC  10.9 (H)
• Neutrophils  76 (H)
• Neutrophils (absolute) 8.2 (H)
• Creatinine, Serum  0.56 (L)
• BUN/Creatinine Ratio  25 (H)

Other labs that have been abnormal:

• DHEA Sulfate = 26 at 2/2/12   and 31 at 11/8/12  (now supplementing but no retesting done to date)
• HLA B27 Antigen = Present at 5/5/11
• Vitamin D3 = 23 at 4/10/12,  30 at 11/8/12 (taking supplement)
• PTH, Intact 92 (H)  at 11/8/12  (I just noticed this was H, apparently my doctor missed it)

Other labs of mention:

7/19/12

• Immunoglobulin A = 108 (N)
• Immunoglobulin G = 1007 (N)
• Immunoglobulin M=  74 (N)
• Sjogren’s all negative

4/5/12

• T4, Free 1.1 (N)
• T3, Free 2.7 (N)

11/8/12

• T4, Free 1.2 (N)
• T3, Total 115 (N)

2/5/14

• Ferritin, Serum 109 (N)

6)  Physical Exam:  I need her BMI, Blood pressure and Pulse.

• BMI  31.3
• BP   I don’t remember the exact numbers but it was 140-something/high 90s at the last doctor visit in Jan 2014. Normally I am in the normal range but it does go up with pain which I was in a lot of at the last appointment (and which the BP cuff causes). I have never been diagnosed, or even concerned, about high blood pressure
• P  76   (my daughter, an RN and living at home, just took this for me as I was sitting up in a chair)

7) It would help to know if there are any drugs she has tried, and how she tried them, that DIDN’T work previously

• Prednisone = could not tolerate this more than 3 days – do not recall dosage
• Methylprednisolone = 3 months @ 4mg BID did not seem to help. Weaned on and off with 4mg once a day.
• Sulfasalazine = 500mg once daily while weaning off the methylprednisolone, then 500mg BID.  BID caused stomach distress so weaned off and discontinued.
• Acyclovir = 400mg BID. Was initially on this from 11/12-11/13 and it did not seem to affect any symptoms. However, after stopping (per my doctor) my mouth ulcers seemed to increase, so she had me restart it 1/14. Finally by 4/14 the mouth ulcers have calmed down. So the Acyclovir must be helping the mouth ulcers. I continue to take this.
• Cipro = as mentioned above under back pain, I took a 3 day course for a suspected UTI @ 3/12 and it helped my back pain but upon discontinuance the pain returned.
• Plaquenil has been prescribed but due to the fact I am Glaucoma suspect (from years of Topamax usage) I refuse to take it due to side effects affecting the eyes.
• I do take 20mg Baclofen 2-3x/day to help with muscle spasms.
• I take 1000mg Lysine daily per my Rheumatologist
• Rheumatologist has mentioned possibly trying Doxycycline in the future. I will see her again end of May 2014 and discuss.
• I also utilize a NaturoPath and received Chinese herbs, sometimes homeopathy, and Acupuncture. She helps my pain for a couple of days, but nothing has ever helped my fatigue. She explained it is because my body is busy fighting viruses.

The laboratory data suggests Cytomegalovirus active infection.  Your illness may be markedly benefited by specific antiviral therapy. Specific antiviral therapy is Valcyte or cidofovir for CMV.  These must be given by specialists to avoid serious toxicity.

• Learn more about Dr. Lerner here 

1.  In CFS/FMS, especially given the severity of your illness, CMV and HHV-6 IgG titres over 4 would raise a concern of viral reactivation. Unfortunately, the Acyclovir at the dose you are taking would be fairly useless for this, as it is not high enough and it is not active against these 2 viruses. In my patients with suspected viral reactivation, I consider Valcyte for 6 months, following symptoms and titres.  I also am adding Celebrex, which interestingly seems to enhance the antiviral effect, and the supplement Pro Boost 1 packet under the tongue 3 x day for 3-6 months.
2.  I do NOT use lysine to suppress herpes in CFS/FMS/ME, as it works by depleting arginine (which is food for herpes) and the Arginine is critical for growth hormone production. Though I generally prefer natural options, in CFS/FMS/ME I prefer suppressing herpes outbreaks with the antiviral medication (Valtrex 500 mg at bedtime or 1 gm 4 x day at first sign of an outbreak)
3.  In your case, your CMV IgM is also elevated suggesting an active acute viral infection rather than reactivation. If the CMV IgM stays elevated for 3 months or more, a severe immune dysfunction (beyond the normal one seen in CFS/FMS/ME) needs to be considered. Whether I would go with Valcyte now depends on your overall picture (how long has the CMV and EBV IgM been elevated, which EBV IgM antibody is elevated, Is the HHV 6 IgG over 4 or 1:640 or higher, did your symptoms flare in the last 6 weeks suggesting acute CMV or have they been steady suggesting chronic infection, etc). I likely would treat in your case
4. I would consider thyroid treatment regardless of the labs
5. If low blood pressure , irritable when hungry, lightheaded on standing (orthostatic intolerance) , HgBA1C level of 5.3 or lower, or 9 am fasting cortisol under 16 mg/dl is present I would consider adrenal support
6. I would check IgG 1-4 antibody levels to look for immune deficiency. If low, gamma globulin IV or even IM (the latter is much less expensive) can be very helpful for your overall CFS/FMS function and pain (may take 4 months to start working )
7. Treating with the entire SHINE protocol can be dramatically helpful to you overall , as well as for treating immune dysfunction and viral reactivation. See http://www.vitality101.com/shine

In response to further answers from Beverly Dr. Teitelbaum added: 

Hope this is helpful.
Love and blessings

• Learn more about Dr. Teitelbaum here

Acyclovir alone may not be enough if there is both immune dysfunction and a viral infection.  Would be interesting to know the dose that she’s on and whether it had any effect on starting the drug at all.

• Learn more about Dr. Kogelnik here

Dr. Kent Holtorf