Follow Up Doctor's Visit

I met with my doctor yesterday, and I have to say, it went swimmingly!  My labs show no toxicity, and he said we would have seen something already if there were a problem.  I am tolerating the meds very well.  He asked if I have noticed any changes yet.  I told him that I have moments where I feel very good, but they evaporate pretty quickly.  Before, I would have a very distinct energy envelope between mid-morning and early evening where I felt fairly good as long as I kept within my restrictions.  This is different and unpredictable.

He said he noticed that I got up on the exam table easier than I did at my first visit.  I was impressed that he had not only noticed but remembered.  So often, you feel like a blank face on an assembly line, and you wonder if the doctor even looks up from your chart.  I think he is becoming more and more interested and excited in our little experiment.

I can't say that my capacity for activity has necessarily increased, although I did spend almost two hours on my writing project the other day.  I got rather caught up in my story and didn't even notice the time.  I was pretty wiped out afterward, not surprisingly.  But no crash the next day.  I don't know, there may be some minute improvement, but it isn't big enough to quantify yet.

The doctor renewed my prescription and gave me two refills.  I don't have to return for three months.  By then, I should definitely know if the meds are helping at all.  If not, I stop treatment.  If so, we continue.  Fair enough, right?

My mantra these days is "We'll see, we'll see." 

Week 1: Worse Before Better

I have been taking XMRV treatment for one week now.  I expected to feel worse before I felt better, and I think that is true.  However, it is more of a dip than a plunge.  I take the pill at night, and it does make me feel sleepy.  Now, for those of you familiar with CFS sleep disturbances, you know that this is actually a good thing!  I find I am able to drift off to sleep much quicker than usual, and I"m sleeping more deeply than I have in the past.  However, I'm sleeping longer than I had been by about an hour, and I am slow to get going in the morning.

My energy levels have become unpredictable.  I was used to a reliable "energy window" that would last from mid-morning to early evening most days (unless I overdid it).  Now, I'm finding my energy in bursts.  I'm sluggish; then I suddenly feel pretty good; then my energy abruptly disappears, only to come back again a little later in the day.  I'm riding it out.  I am careful to not overdo it when the energy is there, but to pace myself as usual.  When I feel deflated, I rest.  I've been spending more time in my bed than I usually do, not necessarily crashed or even officially resting, but just kicking back.

I'm not getting much done these days; there are still boxes waiting to be unpacked, but those will wait.  On the flipside, my household is not descending into complete disarray.  I'm still able to do minimal activities like laundry and nagging the kids.  I haven't felt the need to call for additional help, like I was afraid I might have to.

I haven't exercised since the move, for obvious reasons.  No stretching, no yoga.  I think I'll try to ease back into the yoga.  See how well I tolerate it.  I hope I do OK, because it helps so much with pain management.

Ha, once again, all I can say is we'll see, we'll see.

XMRV Treatment: First Impressions

So, it's been three days since I began XMRV treatment, and so far... well, not much, really.  My throat is a bit more sore than usual, and I feel a bit more achy, especially in my upper arms, neck, and hips.  Is that the "inflammation" that people talk about?  Also, I feel a little more sleepy than usual.

I don't seem to be having any negative reaction getting on the medication.  I haven't noticed any side effects related to it, like nausea, diarrhea, or insomnia.  The other effects could very well simply be because I've been doing a lot of push/crash for the last month.  First the move, and then my birthday was on the 10th, and I broke a lot of rules that whole weekend.  I crashed on Sunday, but I felt pretty good yesterday.  I had that little bit of energy that makes me wander around the house picking up things.  Good times.

I've been asked what kind of medication I'm taking, and what dosage, but I don't think it's a good idea to mention specifics at this point.  I'd like to wait and see what kind of results I get before first.

I will, however, mention the supplements that I'm taking that I'm hoping will improve my chances of success or extend any gains I might make.

Currently, I take Trader Joe's multivitamin, vitamin D, probiotics, fish oil capsules, denatured whey protein for glutathione, d-ribose x3 daily, melatonin, and generic acetaminophen PM.  I just ordered some sublingual B12 tabs and l-methylfolate, for methylation.

Hm, other than that -- I had a lovely Valentine's Day!  The kids helped make our special breakfast for dinner, and my husband treated me to See's candies.  I hope you all had a wonderful day, too!

It's Here!

The new medication finally arrived today...and I panicked!  After all my determination and tenacity, the moment of truth has arrived.  I am not ignorant of the risks involved.  And I find myself asking, Am I really that bad?  Do I really want to do this?

I mean, I've adjusted to my situation.  I've got so much help.  And things are better here; without the stairs, I'm finding that I'm bouncing back much more quickly.  Of course, "back" means just getting out of bed and able to take a shower.  I'm still housebound.  I still can't get out and visit with friends.  I still can't go to church.

It's time.  It's time to do this for me, to do this for my family, to do this for everyone out there suffering with no hope.  Maybe I can be a piece of the puzzle.  Maybe I can be a part of finding answers, answers that have been so elusive for so long -- long before I first became sick.

And maybe, just maybe, I'll get better.

Bumps In The Road

I like this picture, because even though the road is "bumpy," it looks like it's headed in the right direction.

I had my doctor's appointment yesterday.  He agreed to give me a one-month trial.  One month, and if there are any negative side effects, he's pulling the plug immediately.  One month, and he would like me to be very honest in my assessment of my symptoms at that point.  He was careful to make sure I shouldn't get my expectations up.  He emphasized that it was very possible that I will not see any improvement.

I was thrilled.  I feel like his approach is the safest and best I can hope for.  He is exercising every imaginable caution.  He is making sure that my health is top priority, and if he ever feels the risks of taking the medication are too great, he is going to stop the treatment.  I'm OK with that.  I left his office with a priceless piece of paper in my hands -- a prescription for hope.

Priceless?  Well, let me reword that.  It definitely comes with a price tag.  I found out that my insurance doesn't cover the medication, and that it would cost about $1200.  For one month.  I can't say I was surprised; I had already researched the drugs and knew it wouldn't be cheap.

So, I now have two options.  I can upgrade my insurance, which would increase my monthly premium.  I would still have a $750 pharmacy deductible that I would have to pay up front, and then the medication would be $60 a month.  Or, since I have no idea if I'll be able to continue taking the meds longer than a month, I could simply pay out of pocket now and wait and see.  I have an option for getting the medication cheaper, but it would require waiting about three weeks to get it. 

I'm leaning toward a combination of the two.  Pay out of pocket now, and then upgrade my insurance if it looks promising.  Upgrading my insurance is the better option if I add a second medication to my treatment.

Which all led to a meltdown this morning.  Why?  It's not just the financial stress this will place on us.  We've shouldered financial stress before, very successfully, I might add.  No, I can't help but wonder, is it worth it?  Which really means, am I worth it?

Ah, you think with time you overcome your teenage insecurities.  You accomplish things, you achieve things, you catch yourself feeling proud of yourself once in awhile.  And then something like this happens, and the old voices you have spent years silencing rise again to the surface.  The old voices telling me I'm worthless.

But what if I asked my children, "If you could have your mom back for just one day, how much would you pay?"  I think the answer would be more than a thousand dollars.  And if I asked my husband, "If there was the slimmest chance that you could ease your wife's suffering for just one day, how much would you pay?"  I imagine his answer would be close to a million.

First Visit With ID Doctor

I had my long-anticipated first visit with an Infectious Disease doctor.  It went as well as could be expected.  He knew a little about CFS, and even less about XMRV.  And here I come in, telling him I have CFS and am XMRV positive.  What did I expect?  That he would turn around and write me a prescription on the spot?

No, of course not.  What I expected -- and hoped -- was that he would be open-minded and intellectually curious.  Which he was.  He gave me a lab requisition to get a baseline, and he told me he would research XMRV before our next appointment, in two weeks.  He said he would consider -- CONSIDER -- treating me, based on his findings.

That's all I can ask.  I know there is a lot of controversy surrounding treating XMRV.  I know that not everyone who tries treatment gets better.  I know that it might not work for me.  But something in me tells me I have to try, I have to see for myself.  If I get better, I am not going to recommend everyone who has tested XMRV positive go out and demand HAART treatment.  But I am going to raise my voice like a bullhorn, and let anyone who will listen to me know that something needs to be done.  More research.  Safer drugs. 

It's time to stop sweeping under the rug 4,000,000 people suffering from such a debilitating disease.

The Waiting Game

I was finally able to get my labs done yesterday.  I cut my morning rest short, and I arrived at the lab at 11:40 am.  They close at 12 pm for lunch.  My timing couldn't have been better.  Twenty minutes layer, I was staring at a tray full of vials filled with my blood.  An awful lot of them.

I called my husband, feeling triumphant that I had completed that task.  When I greeted him, he said, "What's wrong?  You sound terrible."  Yep, he's that good.  I guess I didn't sound as triumphant as I felt.  He could tell the ordeal had wiped me out, just by hearing me say, "Hi, babe."

So now I wait.  I wait for my doctor to get back test results that will tell her nothing... and then the test results that will tell me everything.  Am I XMRV positive? Or will I test positive for one of the other viruses they've discovered?  We'll see.  Once I know, I can decide on a course of treatment.  See if I should wait for more science or go for HAART treatment. 

Have I ever mentioned how impatient I am?  Let the torture begin.

Deflated

So, I went to the doctor today.  The last time I had seen her was two and a half years ago.  At that time, we were wading through all the tests to eliminate all other possibilities.  I wouldn't exactly say that we're back to square one, but it's probably no more than square three.

So, I need to get some labs done.  Look to see if I have lupus, Lyme, mono AGAIN.  She wouldn't prescribe Klonopin for me just yet.  She also didn't seem to be jumping up and down about the LDN.  I asked if she'd heard about the XMRV studies, and she said they were "inconclusive."  I told her there were people out here that have tested positive for XMRV and started taking HAART therapy and have been getting better.  She does support me getting tested for XMRV (I mean, what is she going to say, I'm paying for it), and she says she'll keep an open mind if I come back positive.  She would want me to consult with an ID first, just to cover her back if she does go out on a limb and prescribe the HAART meds for me.

What slight glimmer of hope did she offer me in the interim?  She gave me samples of Cymbalta.  She said many of her patients have shown significant improvement on it.  I told her that the pain is minimal for me, that the fatigue is a much greater concern.  Still, she thinks I should give it a try.  I didn't remember in the office that Cymbalta is an anti-depressive; for some reason, I was thinking it was a sleep aid.  Probably because the commercials are so similar.  I did not tolerate antidepressants well in the past; they increased my insomnia, made me feel really wired.  And I am NOT giving up my sex life.  It's the only part of LIFE that I really have left, and I'm not going to jeopardize it.  If there are any sexual side effects, we're done.

As you can see, I'm not thrilled with how things went today.  Add to it that my appointment took two and a half hours, and by the time I got in to see the doctor, I was a trembling, emotional mess.  Totally screwed up today, and I know I'll be reaping the payback tomorrow.

Still... the most important thing that happened today is that we are moving forward with the XMRV testing.  Klonopin and LDN are for interim relief, in my opinion.  I believe the HAART treatment is what will really be helpful in returning my life back to me. 

ME/CFS Awareness: Managing CFS

There is no treatment for CFS. You treat the symptoms; you manage CFS.

I currently do not take any prescription medication. I have in the past, but it was either not helpful or made things worse. Sadly, the medical community has not been my best friend when it comes to CFS.

So, here is what I do to take care of ME (get it?):

1. PACING!!! There is no drug or supplement or protocol that has done more good for me than pacing. My quality of life skyrocketed once I found out that you can not "push through" CFS. I still make mistakes ... and learn my lessons ... but overall, I do pretty well making sure I get plenty of rest between high exertional periods. It has allowed me to go from being a zombie 24/7 to being lucid and functional 3 to 7 hours a day.

2. Formal, scheduled periods of rest. This is a bit different from pacing, I think. Twice a day, regardless of activity level or level of fatigue, I rest for 30 minutes. I go in my room, put on my migraine/sleep mask, set the timer, and just rest. I try to add a little deep breathing and maybe some light visualization for relaxation. But I don't push it. Sometimes my mind races for the full 30 minutes; sometimes I fall asleep. Usually it's somewhere in between. I usually feel much better afterward, but if not, it's a great gauge that tells me I need to slow down a little more.

3. Supplements. I discovered pretty early on that you can be so desperate to get rid of CFS that you'll spend a small fortune to try anything! I use a little more restraint now. My rule of thumb is that it has to either be obviously effective or good for my overall health. At night, I take a multi-vitamin, calcium, magnesium, fish oil, and melatonin. In the morning, I take a mega dose of B12 sublingually, CoQ10, and a B complex. I take .75 oz. of dark chocolate twice a day, after my rests. I have begun taking additional anti-oxidants, including CoQ10 in the afternoon to see if it helps with my afternoon slump. I had been taking NADH, but I stopped for a few weeks to see if it was helpful. I think it was, so I'll start taking it again next week. I'm also going to be testing electrolytes and d-ribose.

4. Exercise. Right now, I do about 15 minutes of stretching daily to ease pain. I am hoping to begin adding 5 minutes of cardio. No panic, just something very low impact that I can monitor and pace carefully -- probably rebounding (mini-trampoline) because it has the added benefit of flushing the lymph nodes and improving the immune system.

5. Diet. OK, I have to admit this is more theory than practice at this point! Although I have made some progress by eating healthy dinners. I have easy, healthy recipes that even my kids can make if I'm not up to it (see my other blog, The Flagging Chef, sidebar). The next step is to cut down on the sugar and other high Glycemic Index foods so I have a more steady stream of energy. Ha! We'll see.

Did I leave anything out?

Bad Medicine

I ran out of melatonin a couple of days ago, so I decided to try traditional sleep medicine instead. I chose some generic brand liquid gels. Well, it didn't help me get to sleep at all; my mind was racing with business stuff, and it took awhile to finally fall asleep.

I think I slept soundly, pretty much, but oh my gosh -- waking up was brutal!!! I couldn't do it! I try to get 8-10 hours of good sleep a night; more than that, and I never quite shake off the sleepiness. I finally dragged myself out of bed at 10:00 am, after a good 12 hours of sleep. I could barely make my bed. I know I did yoga, but I don't think I finished it all. I can't remember doing the final back stretches and corpse pose. Did I stop in the middle? Did I get distracted? I just don't know.

Bad medicine! Bad! You are heretofore banished from my home. I'm going shopping for more melatonin today.