Report on appt with Dr Klimas (long)

[Guest guest]

Dear fellow travelers,

I had a follow-up appointment with Dr Klimas recently, and I thought y'all

(love that southern form of address!) might be interested in what she had to

say. Keep in mind that this follow-up was to address my particular health issues

& test results, and should not be generalized to every case. YMMV, etc.

[background: As some of you may know, I've had CFS for many, many years. I've

been disabled and unable to work for over 10 years at this point, and had

similarly difficult periods earlier in my life. Although I'm not a big fan of

feeling dragged out all the time, and completely exhausted and flattened when I

try to exert myself (to go on errands, work in the yard, go on " expeditions " ),

the biggest problem by far is the brain fog. Cognitive problems with what they

call executive function prevent my doing anything but the most simple tasks,

unless I gather my energy and try really, really hard to stay focused. Like I'm

doing as I write this. Anyway, having CFS sucks, to be frank, and over the past

6-7 years I've been making every effort to fight it.]

My initial visit with Dr Klimas, in person in Miami, was October 2010. The

two follow-up visits have been by telephone, since I live in Salem,

Massachusetts and it takes a major effort for me to get down to Miami.

After the initial visit, she Rx'd Imunovir, which I obtained from Rivex Pharma

in Canada as it is not available through U.S. sources. It is an immune

modulator. I took that for 3 months. I did feel some of what, for me, are normal

" die-off " symptoms, sort of flu-like, especially when I began to take it.

My initial blood tests back in October showed way-high inflammatory markers. The

blood tests that were run before this most recent visit (early July 2011) showed

improvement. Dr Klimas expressed some mild surprise that I was not feeling much

better, because the test results were so much improved. Knowing the test results

had improved gave me some renewed optimism; since how I'd felt hadn't changed

much, I was beginning to feel discouraged. Anyway, since there was clear

improvement, she recommended that I take Imunovir on a 3-month on, 3-month off

schedule for awhile. I expect how long will depend on how the blood test results

come back in 3-6 months.

Dr Klimas also recommended Florinef, for my low blood pressure, which is most

likely from low blood volume. She asked me to keep a log of my blood pressure;

I'm to take it first thing in the a.m. while I'm still flat, then 10 minutes

after I'm up and around (and just sitting in an upright position doesn't count,

she means standing and walking around). So far my morning BP is ~100/62 upon

awaking, and ~95/60 after I've been up for 10-15 mins. I have no idea if this is

a normal pattern or not. Pulse usually goes up ~10bpm in that time. Once I start

the Florinef Rx, then I assume my bp averages will go up.

Back to blood test results. (Sorry, don't have specific numbers at hand right

now.) She said my NK function has come up into normal range; she said the

improvement was " pretty impressive " . There is less Epstein-Barr expression than

before. Cytokines still show there's some inflammation, but it's gone from being

10 out of 16 above normal (and some of those " crazy high " ) to only 3 out of 16

high. IL-1 alpha is the only one still way high. Interferon gamma is high, which

she says is good " as it is an antiviral " (and antibacterial, according to the

Wikipedia article). My IL-4 is still a bit high; she says that's related to

allergies. [Note: several of my doctors have commented that blood tests show I'm

allergic to cats. I'm not giving up my cats! I'm resigned to some level of

allergies on that account.] Dr Klimas also says that IL-5 is still high but is

coming down. She says IL-5 is important to CFS... but I didn't manage to write

down why. It also seems to be associated with allergies (and asthma).

I have been taking LDN (Low-Dose Naltrexone) at 4.0mg before bedtime for awhile

now, Rx'd by my local GP, who looked at the info I brought in and said, " Okay,

why not? " Dr Klimas is going to Rx a liquid form to make it easier to play with

the dosage, and she wants me to increase the dose and split it between a.m. and

p.m.

We talked about exercise. I'm trying to do a little bit (and I do mean a little

bit) of Pilates exercises once a week. She recommended 5 mins of exercise,

followed by 5 mins of rest, then repeat a couple times. Also suggested getting a

heart rate monitor with upper limit alarm, and using that to regulate the

exercise/rest cycles. I had gotten a heart rate monitor last fall that uses a

chest strap, but it's kind of a hassle to " gear up " with that for just 10 mins

of exercise. I did some searching last night and found something called the

ePulse 2 heart rate monitor, which straps to your forearm and doesn't require a

chest strap. I think I'm going to order one of those and see if it's any more

convenient.

Now on to sleep. The same month she recommended a sleep study (at my initial

visit with her), my health insurance company notified me that they no longer

cover sleep studies. Fine. So we went with a less-comprehensive at-home type.

The office sent out a device to wear while I slept. I wore it for several

consecutive nights, and then sent it back. The analysis showed, to my surprise,

that I have mild sleep apnea; my oxygen rate was low ~6% of the time. Dr Klimas

suggested I try getting fitted for a dental appliance that is supposed to help

with apnea. My partner looked into this for himself and rather scoffed at the

idea, since the gizmo appears to have only about a 50/50 chance of helping.

However, I'm determined to pursue every lead in improving my health, and 50/50

sounds like pretty good odds, compared to some of the other things I've tried.

So I'll probably pursue that. Dr Klimas continued by saying my alpha to deep

sleep ratio is poor. Also, my pulse during sleep is not as slow as it should be,

which means my night-time adrenaline level is too high.

Dr Klimas said there are some drugs that can help you get into deeper sleep

stages. I said I'd heard some of them were hard to get off of, and she said you

don't want to be on any of the " hypnotic " class of drugs. The one she mentioned

trying with me (after I get the dental appliance and see if that helps) is

called Doxepin. It's listed as a tri-cyclic antidepressant, but it has

antihistemene activity, which is the basis for using it as a sleep aid. And I'm

one of those people who is knocked for a loop by over-the-counter

antihistemenes. With that she would Rx a liquid form, again so as to be able to

more easily experiment with the dose.

One final note on sleep: I got a Zeo home sleep monitor after my visit with Dr

Klimas last October. It's a cool gadget, and uploads the data to their web site

where you can view charts and graphs of your results. However, my data appeared

to show that I was awake most of the night, when clearly (I thought) I hadn't

been. The company even sent me out a replacement sensor pad in case the original

one had been defective, but I kept getting the same type of results. It seems as

though I am in such light sleep stages most of the night that the monitor

doesn't pick it up as being asleep. I will start using the Zeo monitor again

once I get the dental appliance and/or start with Doxepin to see if that

changes.

So, I have some hope, and I have a plan.

One last thought: I asked her about the Lipkin XMRV study, and any other

research she might have heard about lately. She said that the Lipkin study would

probably take another 6 months to produce results. I saw a video of him giving a

presentation at the WPI, and was very impressed by him. But she said that even

if the XMRV connection doesn't pan out, the really good news is that a number of

researchers have become interested in CFS, and are convinced that the illness is

infectious in nature. She mentioned Dr Adler, Dr Lipkin, and Dr Jay Levi, and

said all three of them are Nobel-caliber scientists and are thinking about the

CFS problem now. That is the best news of all. (And maybe somewhere down the

line one or more of them *will* win a Nobel prize for elucidating this

frustrating illness.)

Okay, I think I'm all written out now. I hope these notes are interesting and/or

useful to some of you out there, and I welcome any comments.

Best wishes,

Marcia on

in Salem, Massachusetts