Treatment Update

Hello, I'm here!

Sorry I fell into a black hole for awhile. With my grandfather's funeral, the holidays, and a severe crash that lasted for three weeks, I barely had the time and energy to get through each day for awhile. But I'm happy to say that with the new year came a new run of good health, and I've been doing well the past two weeks.

As always, it's hard to keep an accurate perception of things while in the midst of a crash. During the holidays, I was feeling pretty down, certain that none of the effort or expense of treatments this past year has had any effect at all. Lab tests taken in December showed little change, and my doctor in NYC sent me the results with a note that said, "About the same. Continue treatment." I was pretty bummed.

Once I started to feel better, I decided to take a more analytical approach (watch out, here's the engineer in me coming through again). I track how I feel each day and the amount of exertion and stress I had. I just use simple number ratings, from 1 to 5, that I jot in my journal at the end of the day (and, yes, I graph them!). So I let the numbers tell the story.

It turns out that, although I had some really great months this past year, the overall average was about the same as it has been for the past 6 years. That was kind of depressing, so I decided to look at my level of exertion. That graph went steadily up from January through the end of the year. I had a couple of bad crash months when I wasn't able to do a lot, but overall, I am able to be more active on most days than I was a year ago. This is exciting!

I also noticed that I did especially well during the three months that I took Naltrexone (which is supposed to help increase Natural Killer (NK) cell function). So I asked my doctor if I could try that again, and she agreed. She said many of her patients feel better on Naltrexone, even if the lab results don't show it. It might have been coincidental, but I'll try it again and see.

So, here's the basic summary of my treatments this past year:

• I took a low dose of Valcyte for two months (Jan - Feb) but quit it because my white blood cell count dropped so low.
• I took Valtrex (sometimes 500 mg per day and sometimes 1000 mg) for 9 months and am still on it (downsides include the expense and sometimes GI problems).
• I took Naltrexone (3 mg per day) for 3 months (Aug - Oct) and felt pretty well, so I'm going to try another 3 months of it.
• The results? I still feel about the same on average, but I'm able to be more active. That means that I'm functioning at a higher level than a year ago. I guess I feel about the same because as I've improved I've automatically increased my activity level.

So, I'm quite optimistic about the new year. I'll let you know how the second round of Naltrexone goes, and I'll try to get back into the blogging habit.

Now, I'm heading outside to throw a football with my son.

CFS and Valcyte

Over the past few months, I've received dozens of e-mails from all over the world, asking me about Valcyte. I've gotten the impression that most of these people have read just one of my old blog entries, from this winter when I briefly tried Valcyte. I was curious about this onslaught of questions, so I tried typing "CFS" and "Valcyte" into Yahoo and guess what? One of my blog entries from March was the very first search result! I'm certainly no expert on Valcyte with my limited experience, so I thought it was time to supply some updated information and references. Let's hope this entry takes the place of that old one in the search engines!

For starters, CFS has long been thought to have some connection with a handful of viruses. Research in the past few years has proven this connection. It has been confirmed now that about 12% of the population that catches certain infections goes on to develop CFS. Mononucleosis (often caused by the Epstein-Barr virus and known sometimes as glandular fever) and Lyme disease are two of these infections known to trigger CFS. Additional research has shown that some of us are genetically predisposed to develop CFS (lucky us).

Dr. Bell has an excellent article that summarizes the CFS viral connection.

More recently, the entire CFS community was astounded by the results of a study using Valcyte to treat CFS. Dr. Jose Montoya of Stanford University treated 25 of his worst CFS patients with Valcyte and, amazingly, 23 of them improved significantly (it even sounds like some of them are almost completely recovered). Dr. Montoya is now conducting a full placebo-controlled trial of Valcyte for another 100 CFS patients. Some important facts to note about these studies:

• Patients who improved had abrupt-onset CFS and had significantly high levels of Epstein-Barr virus (EBV) and Human Herpes Virus-6 (HHV-6) in their blood.
• Most, if not all, patients who improved first experienced a severe worsening of their symptoms that lasted from a few weeks to many months.
• CFS patients were treated with Valcyte for a minimum of 6 months, some for much longer.
• Valcyte is a fairly toxic medication, with some serious risks associated with it.

In addition to Valcyte, there are several other anti-viral medications (some with fewer risks than Valcyte) that have had some success in CFS patients, depending on which viruses are present. Famvir and Valtrex are two of these medications.

Here are some references for more information:

Dr. Podell, in Somerset, NJ, is also treating CFS patients with Valcyte. He's written an excellent summary of CFS and Valcyte, including many links to additional resources as well as links to Dr. Montoya's information.

Dr. Martin Lerner, in Michigan, has been treating CFS patients with a variety of anti-viral medications, including Valcyte, Valtrex, and Famvir, for several years. His website includes detailed information on his trials and treatments.

The HHV-6 Foundation has some excellent information on HHV-6 infection in CFS.

There is more good information at the website for Viral Induced CNS Dysfunction, including an excellent description about testing for EBV and HHV-6.

The CFS Phoenix Newsletter, a wonderful resource for keeping up-to-date on the latest in CFS research, has a detailed article on the role of HHV-6 in CFS.

Finally, if you want to hear about other people's experiences with Valcyte and other anti-virals, check out the message boards at ProHealth Immune Support. Registration is free, and there are many message threads on these topics. Just click on Message Boards and take a moment to register.

I hope that these references help those of you interested in learning more about treating CFS with anti-virals like Valcyte. These are the websites that I've turned to in the past 6 months. As for myself, I'll continue to write here at my blog about my own experiences with Valtrex.

Update on my anti-viral treatment

Sorry to be so silent lately. I've been very, very sick. I've probably spent less than 15 minutes total on the computer in the past week, just to quickly check for urgent e-mails. My current rough state might be good news, though.

Two weeks ago, I had a follow-up phone consultation with Dr. Levine. In case you're new to my blog, she's the doctor who tested me for various viruses and for immune system function back in March. She found that I had higher than normal levels of HHV-6 (though my EBV and CMV levels were normal), and we decided I would try Valtrex, an anti-viral medication that works against HHV-6 but is much less toxic than Valcyte (which is effective against both HHV-6 and EBV).

So, I've been taking a low dose (500 mg/day) of Valtrex for the past four months. I have had some mild improvements during that time. The improvement has been subtle, difficult to notice on a day-to-day basis, but slow and steady when I look back at my records (I note how I feel each day, on a 1 to 5 scale, on a calendar). Also, both my husband and my mother commented to me recently that I seemed "more like myself" lately.

When I spoke to the doctor two weeks ago, we decided that I would try increasing the dose since the Valtrex seems to be working and I'm tolerating it OK. So, I doubled the dose to 1000 mg/day. Ever since then, I've had severe CFS symptoms almost constantly - sore throat, aches, exhaustion, sleep dysfunction - all my "normal" symptoms but as bad as my worst days every day with very low stamina. I've spent most of the past week in bed or on the couch (thankfully, my kids have been with their grandparents this week).

The good news (I hope) is that this characteristic worsening of symptoms on an anti-viral medication is supposed to be a good sign. Everyone who's taken Valcyte for CFS has reported the same sort of initial reaction. The theory is that this is a "herx" reaction, a temporary worsening caused by the drug killing off lots of virus in cells and tissues that then floods the bloodstream, triggering the typical CFS over-reaction of the immune system.

Despite my incapacitation, my spirits have been good. I'm hoping that this means that the drug is working for me and that I'll experience some improvement once I get past this stage. I'm sure things will get much more difficult for me tomorrow, when my kids return home. I love them and miss them, but I've really needed this complete quiet and peace this week.

I'll try to keep you posted on my progress and plan to post some general information on viruses, anti-virals, and CFS tomorrow. That's more than enough for today!

Anti-Virals and Emotional Instability

After my blog last week about the sudden depression that caught me off guard, an acquaintance from the immune support message boards sent me an e-mail that made me feel a whole lot better. Here's part of what she said:

"Valtrex certainly can cause a die-off reaction! My doctor, who has treated more than 200 patients with antivirals, states that about 30% of his patients (admittedly a very sick group) get a significant die-off with Valtrex or Famvir.

I have been struggling with die-off symptoms on Famvir (a very similar drug to Valtrex) for seven months now. The ones I had at the beginning were every bit as bad as those experienced by many Valcyte patients. (This was especially surprising to me since my level of functioning prior to the drug was pretty high.....at least a notch or two above yours, based on what I've read in your blog.)

Note also that the biggest initial die-off reactions to antivirals tend to be in emotional lability. This was the case for me, I have noted it on the ProHealth board, and my doctor told me (after I'd already experienced it) that it was the case for many or most of his patients who got die-off as well.

My doctor told me when I was struggling with it that my suffering eventually would lead to improved mood in general. Those around me (my husband etc.) now state that my emotional state (in terms of positivity and resilience to stress) has indeed improved a lot since I started the drug, regardless of how I seem to be feeling physically or how well my cognitive abilities are doing. (A number of my other symptoms have improved now compared to where I started too, but only when I stop taking the drug for a day or two. The continued die-off from the drug seem to be covering up the improvements.)"

I found this extremely interesting. As I mentioned in a previous blog, I have sometimes felt lately that I was losing my mind - feeling fine one day and sobbing uncontrollably the next. It's so comforting to find out this is a normal reaction.

More on reactions to Valtrex in another blog. The system is about to shut down....

Test Results and Next Steps

Finally! I spoke with Dr. Levine for a half hour today to review my blood test results and discuss treatment options.

My viral antibody tests were positive for HHV-6 and negative for CMV (unusual for someone with children she said). She couldn't find my Epstein-Barr Virus results while we were on the phone (though I've had EBV tested several times during the past 5 years with normal or borderline results).

Then she reviewed my immune system test results. My immunoglobulin IgG was low and my Natural Killer (NK) cell function was in the low-normal range. She said the lab listed "normal" as 3 and up; my NK function was 17. She said a healthy person should have a NK function in the 50-60 range, so she'd like to bring mine up a bit. I suspect that some of my past efforts to improve my immune system function have helped to keep my results from being too low.

Next, we discussed treatments. At first, she assumed I'd go back on Valcyte, since I'd been on it before and had asked about it during my visit. However, I've been feeling a bit nervous about the side effects and potential risks of Valcyte, so I asked Dr. Levine a lot of questions about risks and benefits.

She said she hasn't seen the same kind of dramatic results that Dr. Montoya at Stanford reported from his initial studies (she's talked to him extensively about his studies and her patients on Valcyte). Some of the reports I've read have emphasized that Dr. Montoya's Valcyte patients all had very high levels of HHV-6 and EBV in their blood. Dr. Levine said she currently has 7 CFS patients on Valcyte and none has experienced lasting improvements. One improved initially but then felt worse again (typical unpredictable CFS, right?), and another recently quit taking Valcyte. In addition, she confirmed the significant risks of Valcyte that my own doctor and I had discussed previously. It definitely affects bone marrow and may have a theoretical increased cancer risk (hard to say, since there's not enough data on CFS patients yet).

Finally, she suggested we keep Valcyte on hold as a second-line treatment to try later if other treatments don't work. Instead, she suggested a three-part approach for me, adding a new treatment on each month if I seem to tolerate them well:

1. Valtrex, probably for 6 months. Valtrex is another anti-viral, well-known for its use against more common types of herpes virus. It has no side effects and none of the serious risks of Valcyte and is far less expensive than Valcyte.
2. After 4-6 weeks, add a tiny dose of naltrexone to boost NK cell function.
3. If those are well-tolerated after another month, add weekly injections of gammaglobulin to help increase immunoglobulin.

It's a two-pronged approach to eliminate HHV-6 while also helping to improve immune system function so that I might be better able to fight off infections on my own. Dr. Levine emphasized that this isn't a cure, but she's had patients improve somewhat, to "a new plateau level," as she put it. I said I'd welcome any level of improvement.

What does this all mean for me? I think I'm relieved to have other options. I was getting really nervous about Valcyte, especially at such high doses and in the absence of very high blood levels of HHV-6 and EBV. I was also starting to feel stressed looking at the calendar and wondering how I'd handle two months of getting much worse (as often happens initially on Valcyte). I like the plan to try something milder first. At the same time, I've had to admit to myself a bit of disappointment that there's no miracle cure (yet!). The initial news of those 22 patients who improved dramatically on Valcyte was (and still is) pretty exciting, and I may have gotten my hopes up.

I think all of this emphasizes what many CFS experts have been saying for years - that there are likely subsets of CFS, initiated by different triggers and probably responsive to different treatments. I still feel very, very optimistic about the terrific progress in CFS research in the past few years; Valcyte is likely just one of several breakthroughs we'll hear about in the near future.

I'm glad that I went to see Dr. Levine. Being someone who likes to deal with hard data and scientific fact, I am thrilled to have some real information on what's going on in my body, even if the picture is not yet complete. There is nothing more frustrating in the early days of CFS than all of those lab tests that show everything is "normal" while you keep suffering. I think I'll take my boys up to see Dr. Levine during the summer to see what their blood tests show.

Whew, that's enough for today. I've been in a fairly bad crash the past two days. I'll let you know how things go with this new treatment plan.

Still Here!

Yes, I'm still here. The past two weeks have been a whirlwind of activity here. I traveled to NYC for my appointment with Dr. Levine (more on that in a moment). We went to Maryland for a wonderful, relaxing camping weekend with friends. It was so low stress that I actually managed a 2-hour hike with everyone and still felt good the next day! I was amazed and wondered if that burst of stamina was the result of my brief Valcyte trial...but the past week brought me back to reality.

My boys had their Spring Break last week, so we had a few days at home between trips and then drove 8 hours to visit my family in Rochester for Easter. It was wonderful to see my family, but the trip completely exhausted me. I sleep so poorly when I travel, despite all my various medications that work so well at home (unless we're camping; I do OK in our camper). I was a mess today and spent most of the day in bed, but now I'm beginning to perk up a bit. Can you see why I haven't had time to write?

There isn't much to report yet on my visit to Dr. Levine because I'm waiting for her to call me. I gave her a brief recap of my illness and told her about my aborted trial with Valcyte. She said I could try Valcyte again, this time at the full dosage being used in the Stanford studies. Then she took a LOT of blood to run tests for various viruses as well a a full immune system panel. I was excited about this because I've wanted the immune system panel for awhile now, but my own doctor said she wouldn't know what to do with the results.

So, I'm still waiting for Dr. Levine to call back with the results of my blood tests. She said she might end up trying some other anti-virals or additional medications based on the results. I have a list of questions for her when she calls. I want to make sure I fully understand the risks involved before taking the high doses of Valcyte. At the same time, after this exhausting weekend, I'm eager to try something - anything that might offer some hope. I'm really sick of being sick.

I was catching up on e-mails this morning and saw more useless CFS studies. I'm so fed up with seeing precious research money being spent on proving that CFIDS isn't depression (it's been proven many times already) or on minor treatments or supplements that offer only a tiny improvement. This morning, I saw a very lengthy treatise on "managing CFS through pacing." I don't want to manage this illness; I want to get rid of it! The glimmer of hope that there might be a chance for recovery makes me impatient with all these management strategies (even though they have helped me a bit over the years).

OK, enough ranting for today. I need to go pick up Craig from school. I'll write more soon.

Around and around it goes...

I'm finally beginning to improve a little from my bronchitis (and low white blood cell count), but yesterday, my 9-year old son, Craig, started to cough. When will this end? Between the two boys and me, we've had 5 cases of bronchitis in under two months. I don't know how my husband manages to stay healthy.

Craig doesn't actually have bronchitis yet - the doctor today said his lungs are still clear - but his sinuses are swollen again. With his history of sinus infection and our family's run of bronchitis this week, the doctor put him back on antibiotics today. His fever spiked up to 104 tonight. The poor kid is miserable. To make matters worse, it's state testing week at school here in Delaware, so he's missing that, too.

As for me, I'm going back to the lab tomorrow or Friday to recheck my white cell count. I also made an appointment today with Dr. Susan Levine in NYC. She's an infectious disease specialist and a well-known CFIDS doctor. She was recommended by a bunch of people at the immune support message board and is well-versed in using anti-virals for CFIDS. I was shocked to get an appointment with her for next week! I was worried she'd be booked for months.

I'm still pretty sick but am feeling good about seeing Dr. Levine next week. I know my family doctor will be relieved to hear it, too.

Thank you so, so much to everyone who has left me such wonderful, supportive comments this past week. I was really down, and it helped immensely to hear from all of you. I also got an amazing note from my oldest friend (thanks, Michelle!). Knowing I'm not alone makes all the difference!

Rough Times

I had a really rough weekend. Friday afternoon, my doctor left me a message that I needed to stop taking Valcyte immediately. My labwork results had shown very low white blood cell counts. It's probably due to the bronchitis, but Valcyte is known to affect bone marrow. I was upset about stopping the anti-viral, but I could tell my doctor was seriously concerned, so, of course, I listened to her.

Over the weekend, my bronchitis got much, much worse, despite the anitbiotic. Saturday passed by in a fog. I had severe, deep aches all over my body. My chest and sinuses were solidly congested,and I was coughing so hard that my ribs ached by Sunday. I mostly just stayed in bed with the heating pad. It was one of those days when I was too sick to even read or watch tv.

Sunday was a bit better, but I still feel pretty rotten today. I got up, had breakfast, read for a half hour, then went back to bed for a two-hour nap. I shouldn't even be sitting up to type this, but I was feeling desperate for some kind of connection with the outside world.

Worse than the physical problems today, I'm feeling so depressed. I'm so sick of the burdens of CFIDS, of living every minute of every day in this constant battle with my own body. I've had enough of all these limits and restrictions. I want to live freely again.

Rationally, I know that I'll feel better about my life when I start to feel better physically, that the bronchitis will eventually clear up and I'll be able to get back to my usual optimism. Emotionally, though, it just all seems so useless right now. I just want to give up, quit fighting, and somehow escape. That's impossible, of course. That's the most frustrating aspect of living with CFIDS. There is no escape, no vacation from it, just an occasional good day (if you're lucky).

Back to bed.

In Need of Nurturing

It's been one of those classic CFIDS rollercoaster weeks. I felt great on Monday, one of my best days in years. I was not only free of most symptoms, but I actually felt full of energy and motivation. Wow! I felt like me again. I cleared off the months-old clutter on the kitchen counters, walked to the bus stop to pick up my son instead of driving, sent off several writing pitches, and baked homemade blueberry muffins for my son who was home sick. Yes, I baked - for the second day in a row - amazing.

Then came the crash. My older son had bronchitis early this week, and as he started to feel better, I started to feel worse. Yup, another case of bronchitis, my second in about a month.

My doctor had warned me that being on Valcyte would make me more susceptible to bacterial infections, and, sure enough, I seem to be catching everything that comes through the house. So, I'm back on Zithromax (antibiotic) and feeling horrible today. My chest feels like it's in a vise, and my legs ache terribly.

Usually when I'm crashed, I'm content to just be alone during the day so I can rest, but today I'm yearning to be taken care of and nurtured. Maybe it's the more traditional "sick" symptoms of my bronchitis triggering memories of childhood.

When I was a kid and got sick, my mom would go into full nurture mode. She'd set me up in my bed with a drink to soothe my sore throat and my favorite Nancy Drew books by my side. When she made a trip to the drugstore for a prescription, she'd come back with comic books or a magazine and a thick chocolate shake from the local burger place. Anytime I got sick, she'd make my favorite baked egg custard pudding with a sprinkle of nutmeg on top. (That's me feeling nurtured; dig that 70's wallpaper, huh?)

Lying here alone with my aches and cough, I'm yearning for that same feeling of being cared for. My husband, Ken, does a wonderful job of taking care of our kids and the house when I'm too sick, but I would love some of that mommy-style nurturing. It would be so nice to have someone here to offer to get me another cup of tea or to pick up a favorite magazine for me at the drugstore with my medicines. And that homemade custard would feel so nice on my raw throat.

Ah, well. It's just me today. "Talking" here on my blog helped me feel a little less alone, and when everyone gets home tonight, I'll probably wish for some peace and quiet!

Valcyte Update

Lots of people have been asking me about my trial of Valcyte, so I guess it's time for a quick update. I've been avoiding focusing on it too much mainly because there's not much to report yet. I'm still not sure whether it is going to work for me or not.

I have now been on Valcyte (at a low dose of 450 mg per day) for 8 weeks. I'm thinking of this week as something of a turning point. Most CFIDS patients who've tried Valcyte report a worsening of symptoms beginning at around week 2 and lasting until week 8 or so. The general theory is that if Valcyte is going to work for you, you should experience this worsening as a sign that the virus in your cells is being killed off by the medication and is entering your blood stream.

So, did I experience a worsening of symptoms in the first two months? I'm not sure. I've certainly had my share of bad days lately, with a few good ones thrown in, but it's hard for me to tell if this is just the typical ups and downs of CFIDS or the result of the Valcyte. Many people with CFIDS who've taken Valcyte get so much worse so suddenly (most advise to plan on being bedridden for at least a few weeks) that they don't understand how I could not know for sure. There are two factors that make my case unique, though:

1 - I'm on a much lower dose than most (the official Montoya trials use 1800 mg per day for the first 3 weeks, then 900 mg per day for the rest of the six months)

2 - I started off in better shape than most. Understandably, Montoya chose some of his sickest patients for his first trial. Many were bedridden or similarly incapacitated. I function at about 40-50% of what I could do before getting CFIDS - quite impaired but considered "mild to moderate" for CFIDS.

So, for these reasons, it seems logical to expect my reaction to Valcyte to be less dramatic than what has been reported so far in most patients.

This next month will be the real test for me. If Valcyte is working, then I should begin to see some gradual improvement in this third month. If I continue to function at the same level, then it's likely this particular anti-viral won't work for me. So, I'm getting my labwork done this week and will refill for one more expensive month before deciding whether to continue. Don't worry - I'll keep you posted!

Setbacks and Struggles

Another lost week. I caught Craig's bronchitis, and it completely knocked me out this week. Plus, Craig's infection recurred, and Jamie had a 1-day crash. I was so sick that I spent 3 days in bed. On Wednesday, both boys were home sick, and I pretty much ignored them (they watched way too much tv!).

So, I'm on Zithromax, and Craig is back on it. The boys are both back in school (just in time for the weekend again), and I'm doing a lot better, though still kinda crummy with really low stamina.

I saw my doctor on Tuesday when she diagnosed the bronchitis. Of course, this infection muddies the waters and makes it difficult to tell what, if any, effect the Valcyte is having. I talked to her about dosing, and she said this is as high as she feels comfortable going. I had my labs done today, so we'll see what they show. I will probably refill the Valcyte for one more month to give it some more time, unless my doctor sees something alarming on my blood tests.

Now that I'm out of bed, I feel so overwhelmed. There are stacks of paperwork everywhere (bills, school stuff, mail), about 80 e-mails in my inbox, and so many writing projects waiting. For the past 6 weeks, I feel like I've been in survival mode, every day just focusing on getting over the next hurdle, never able to move forward or get much done. I know it's this way for everyone with CFIDS (and plenty of healthy people, too!), but it's been especially bad for me since January 1.

My next hurdle is another half day of consulting on Monday, so I'll need to take it very easy this weekend (again) to make sure I'll be able to do it. Then, I'll need to recover quickly because we're driving 5 hours to my sister's house next weekend for my niece and nephew's birthdays. It'll be a busy, chaotic, crowded weekend, so I'm worried about that, too!

Just one day at a time, right?

Two Week Update

Whew, where did the week go? Both of my sons were home sick this week, so it was almost impossible to get anything done. Craig had bronchitis; Jamie had your run-of-the-mill CFIDS crash. Both are doing fine now. They went back to school yesterday, just in time for a 4-day weekend! This is the first crash Jamie's had since mid-October, and he only missed two days of school this time. Absolutely amazing compared to how sick he was last year.

So, I'm sure you're wondering whether the Valcyte is working for me. I'm wondering, too! I've been on it for two weeks now. From what I'd read, I was expecting a sudden worsening of my symptoms as an indication that the Valcyte was working (this is called a herx reaction, common when treating a long-standing infection). I felt pretty crummy for the first week and a half, with really low stamina. I couldn't really tell if this was my "worsening," though, since I'd been in a crash since January 1. Yes, it was worse than "normal" for me but not much different from how I'd felt all month. I was feeling a little down, thinking I'd had no reaction to the medication at all, and it wasn't going to help me.

Then I began exchanging information with other CFIDS patients on Valcyte. THANK YOU to all the people who told me about the message boards at Immune Support!!! Reading about other people's experiences and other doctor's approaches has made a huge difference for me. If you're interested, there are several discussion threads specifically about Valcyte and other anti-virals. You have to register, but it's free and quick.

One thing I learned is that Dr. Montoya is using a much higher dose of Valcyte in the Stanford trials than I'm on. At first, I worried that my dose was too low, but I've learned that some doctors are using lower doses to try to minimize the initial worsening. I'm also wondering whether a lower dose might be appropriate for me since I'm not as severely ill as most of the people Dr. Montoya is treating. I've had CFIDS for just under 5 years and function at about 40-50% of what I could do before getting sick. It's bad, but I know that there are plenty of people with CFIDS who are much sicker, even bed-ridden. I've also done a lot already to help improve my immune system function, which could help me to better tolerate the anti-viral treatment.

So, bottom line is that I'm still not sure whether the Valcyte will work for me. I had three very good days (in a row!) this week, but I'm crashed today after a shopping expedition yesterday. Next week, I'll go to the lab for blood tests to monitor how I'm reacting to Valcyte, and then the week after, I meet with my doctor so we can decide whether to continue the treatment. After what I've learned this week, I'll also talk to her about the dosing.

If you're interested in learning more about treating CFIDS with anti-virals, Dr. Martin Lerner is another doctor who's done a significant amount of work in this field. His website includes an excellent summary of his research (click on Professional Publications).

So, I'll rest up today and hope for a decent weekend.

More Information on New Treatment

Wow...since I posted my last blog about starting Valcyte, I've received a lot of e-mails expressing support, concern, and requests for more information. Thank you all for your notes. I'm reminded once again of how grateful I am for this virtual community of people with CFIDS. I don't know anyone in my local area with CFIDS (though I know there must be plenty of them out there...), and it means so much to be able to "talk" things over with others who fully understand.

I had a few instances of cold feet this weekend (figuratively and literally, with my usual weird temperature fluctuations!). Bottom line is that I have embarked on a course of treatment with a lot of uncertainties, and it's a little scary.

My doctor commented that most clinical experience with Valcyte has been with AIDS patients and organ transplant patients, both of whom have seriously deficient immune systems. The risks and side effects known for those patients might be completely different for me. Yes, I'm ill, but with a mostly overactive immune system and otherwise healthy organs. Who knows how I'll react? Ultimately, I made my decision based on my doctor's support...which was based in large part on her experience with me in the past. She doesn't really know what will happen either.

I don't want to persuade others to try this treatment based only on my experience because there could be significant risks involved.

Here are some of the sources that my doctor and I reviewed:

Virus-Induced CN Dysfunction Website
(a different way of looking at some cases of CFIDS; Dr. Bell told me years ago that he preferred to call the type of CFIDS that Jamie and I have Post-Viral Dysautonomia - same sort of thinking)
I was particularly interested in the page on this website about Testing. In my case, all of the labs used by my insurance company use a fairly useless internal index to report HHV-6 antibodies, so we decided to forgo the test. This page also lists the lab that Dr. Montoya uses for the Valcyte trials at Standford, as well as the link for the upcoming trial (which I would have tried to join if I lived in San Francisco).

HHV-6 Foundation Website
More good information on current research on HHV-6 in CFIDS, including links to Dr. Montoya's research abstract and a full text summary of recent presentations on the topic.

PDR Listing for Valcyte
Here's the listing for Valcyte from the Physician's Desk Reference. This is where it gets scary, but many drugs have long lists of side effects and warnings. My own doctor's intrepretation was important to me at this point.

Well, I hope that helps others to learn more of the facts.

As for me...well, so far I have no idea if it's working or not. I felt pretty good on Saturday and moderately crashed on Sunday. That could easily be more of the same pattern I've been stuck in since January 1 or it could be the start of my worsening due to the drug which would mean that it's working. Impossible to tell yet. I'll keep you posted!

Jumping in With Both Feet

A week ago, I wrote about the exciting new study from Stanford about the 21 people with abrupt onset CFIDS who recovered with the anti-viral drug Valcyte. Since then, articles about the groundbreaking study have been popping up all over (Red Orbit, Boston Globe).

Patience has never been one of my strong points, so yesterday I started Valcyte myself to see if it will help me.

I have still been stuck in this terrible crash that began January 1, still spending days in bed with only brief periods of feeling good. I went to see my doctor yesterday. She has prescribed anti-virals (usually Famvir) for me in the past when I've gotten stuck in a particularly bad crash , and it often helped. I was like a limp rag at the doctor's office, barely able to walk.

As always, my doctor listened to me carefully (and I'm sure could see how bad I was for herself) and considered how to help me. It's a joke between us that I always have some new piece of CFIDS research in hand when I go to see her, and this time I had the new Valcyte study. She'd seen the news herself but now studied it more carefully and said she thought we could try it.

The downside? For starters, the first month's supply cost $300 (that's WITH insurance coverage; without it's $1200). Ken and I figure if it works, I'll be able to earn the money to pay for it (not to mention the money we spend on medicines and supplements now).

In addition, the study summaries I've read said that all of the patients got worse before they got better. This is a big concern for me short term, since next week I start this new consulting job that I'm already scared I won't be able to do. On the other hand, if I continue in this crash as I have for the past three weeks, I wouldn't be able to do anything next week anyway. It's a gamble either way.

I'm scared and excited and trying desperately not to get my hopes up too high. My mind keeps drifting to "what if" scenarios. What if I could work again? What if I didn't have to take a nap every day? What if it might work for my two sons?? The results in the study are so stunning, the stories of the recovered CFIDS patients so enticing.

So, I jumped in and started it. It might work, it might not. I'm trying not to think ahead, just to take each day as it comes, as I have for the past five years.

New Hope?

Our whole family got excited last night about a new study that shows promise for those of us with CFIDS. The basic story is that researchers at Stanford treated two dozen people with CFIDS with an anti-viral drug typically used to treat diseases caused by the herpes virus. The bottom line? Twenty-one of the twenty-five patients experienced significant improvement that has lasted for years after finishing the treatment! All patients whose CFIDS started suddenly with a flu-like illness recovered. The best news of all? A follow-up study (double-blind, placebo controlled) is starting this quarter, fully funded by the pharmaceutical company that makes the drug. Take a look at the details at the link - the stories of the recovered CFIDS patients are so exciting!

My boys screamed and cheered last night when they heard me telling my husband, Ken, about this study. We're all pretty fed up with this stupid disease this week. Craig and I have both been crashed for most of the past week. I've had several days where I was so sick that I spent most of the day in bed. This is unusual for me these days. It's such a disheartening feeling to see the days slip past this way.

Poor Craig has missed four days of school. He went back in this morning, but I expect a call from the school nurse at some point to come pick him up. He was still not back to normal this morning but was determined to go to school. He's had a headache for four days now, so I'm afraid he may be developing a sinus infection.

Craig's 9th birthday is Saturday, and we have plans to have a dozen boys to the house for an Amazing Race party. I'm so worried he'll still be sick. Even worse, the weather forecast is predicting rain all weekend. I was really counting on having this party outdoors! Plus, we have six of our extended family coming to stay with us for the occasion. Wish us luck...