We've had another crazy, exhausting week here. I can't even seem to find time to write regularly!
Both of our boys ended up being out sick from school all last week. I was pushed to my limits trying to take care of them, worrying about them, and dealing with school issues. Craig had a virus that's been going around our area, with sore throat, cough, and losing your voice. He was horribly sick for about 6 days but, thankfully, bounced back by Monday in time to head back to school.
Jamie, our 12 year old, just wasn't recovering. At first, we thought it was "just" a CFIDS crash, but since Jamie's been on Florinef, his crashes have typically lasted only 2-3 days. We'd noticed some mild fatigue and brain fog for several weeks, and then the 8-day severe, can't-get-off-the-couch crash. When he started telling us his knees hurt horribly, the lightbulb went on in our minds. Pain has never been an issue with Jamie's CFIDS, and now his knees hurt so much that he couldn't get up the stairs or walk without severe pain.
In our area, sudden joint pain, fatigue, and brain fog usually mean one thing: Lyme disease. By Monday, we were convinced of it. Jamie's severe crash symptoms had improved, but he could barely walk and was still moderately brain fogged.
I took him to see his pediatrician Monday, and she did a thorough exam. Her first suggestion was to test for Lyme, and, if the test was negative, wait another 6 weeks and test again (the antibody test is often negative for the first 6 weeks of infection). I pushed hard to start antibiotics right away (after having the blood drawn) because of the very high risks of leaving Lyme untreated in someone with CFIDS. Lyme is one of the known infections that can trigger CFIDS to start or trigger a severe relapse. She understands CFIDs and has been very supportive all along, so she agreed.
Jamie started 30 days of doxycycline on Tuesday. Within 24 hours, his knee pain began to abate, and his brain fog lifted dramatically. Even though I was pretty certain he had Lyme, I was still stunned by the quick change. His natural sparkle was back!
Meanwhile, my husband's been out of town all week, and we've had an exhausting itinerary of doctor's appointments, soccer, and chorus rehearsal. Oh, and we were getting a new roof put on the house, so it sounded like elephants were crawling on our roof - tough to nap! Jamie and I spent over 2 hours at the eye doctor's on Tuesday (he needs glasses). Anyway, I'm totally worn out.
This experience just emphasizes - once again - that we have to be our own (and our children's) strong advocates, trust our instincts, and be aggressive in seeking answers when we know something isn't right. It's hard work, but we can't let ourselves get lost in the mainstream medical system.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
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Thursday, April 26, 2007
Thursday, April 19, 2007
News from Planet Jackson
It's been one of those weeks. Both boys have been home sick for four days now, and I've been pretty badly crashed most of the week as well (doing much better today). At times like this, our universe shrinks down to these four walls, trying to relieve symptoms, rest, and do a little homework.
I had perked up enough by last night to go to my neighborhood book group. Even though I was physically still a little run-down, getting out of the house and getting my mind off illness and school was a huge mental and emotional boost. I came home feeling tired but refreshed, and I feel much better today.
As I walked home from my neighbor's house last night, I felt like I was returning to my home planet after visiting an alien world. I thoroughly enjoyed the wonderful conversation of my book group, but when I'm in a group like that, I become aware of how different my life is from everyone around me.
I enjoy these brief immersions in the "normal" world. Book groups (I belong to two) are especially nice because I can discuss the book on an even level with everyone else. Reading is one of the few things I can do just like any other person. Toward the end of our meeting last night, though, the talk turned to other topics. The women around me talked about travel, home improvements and decorating, visits to museums, and other topics of their foreign world. I felt like a reporter from another planet, listening and observing an alien lifeform. I enjoyed the conversation, but there's always a part of me that feels different and separate.
Here I am today, back on my own planet, taking care of sick kids, e-mailing teachers, distributing clipboards and notebook paper to my prone children, and helping with homework. It's a different kind of normal, but it's ours and I'm grateful for what we have and the joys we're still able to experience.
I had perked up enough by last night to go to my neighborhood book group. Even though I was physically still a little run-down, getting out of the house and getting my mind off illness and school was a huge mental and emotional boost. I came home feeling tired but refreshed, and I feel much better today.
As I walked home from my neighbor's house last night, I felt like I was returning to my home planet after visiting an alien world. I thoroughly enjoyed the wonderful conversation of my book group, but when I'm in a group like that, I become aware of how different my life is from everyone around me.
I enjoy these brief immersions in the "normal" world. Book groups (I belong to two) are especially nice because I can discuss the book on an even level with everyone else. Reading is one of the few things I can do just like any other person. Toward the end of our meeting last night, though, the talk turned to other topics. The women around me talked about travel, home improvements and decorating, visits to museums, and other topics of their foreign world. I felt like a reporter from another planet, listening and observing an alien lifeform. I enjoyed the conversation, but there's always a part of me that feels different and separate.
Here I am today, back on my own planet, taking care of sick kids, e-mailing teachers, distributing clipboards and notebook paper to my prone children, and helping with homework. It's a different kind of normal, but it's ours and I'm grateful for what we have and the joys we're still able to experience.
Friday, April 13, 2007
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:
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.
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:
- 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.
- After 4-6 weeks, add a tiny dose of naltrexone to boost NK cell function.
- If those are well-tolerated after another month, add weekly injections of gammaglobulin to help increase immunoglobulin.
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.
Tuesday, April 10, 2007
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.
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.