Every few months, I go through a period of 2-3 days where I get all sorts of strange neurological symptoms. I feel totally uncoordinated. Typing becomes very difficult. Walking becomes dicey. I feel unbalanced. Muscle twitches and numbness comes with it too. I feel like I could fall at any time while walking. It is a very difficult feeling to describe, but other PWMEs say they know exactly what I am talking about.
I'm getting over one of these neuro flare-ups right now.
Most of my crashes do NOT involve these symptoms, so it makes me wonder why a few do. When I first got these symptoms, I thought they were possibly due to low potassium levels, as I'd recently started a B12 protocol. Now, I'm not so sure. I'm very good about maintaining my potassium levels while on the B12 protocol. Are these symptoms just another bizarre aspect of this condition?
I'm looking back on my health records for the last year trying to find any common denominator between these neuro symptoms and other factors near in time. So far the only possibility I've come up with is that many of these episodes arose after eating eggplant. Eggplant, of course, is a member of the nightshade family of foods, which is sometimes cited by PWME's as problematic -- specifically, leading to neuro symptoms. But the thing is, there have been many more times throughout the past year when I've eaten eggplant and not gotten these symptoms. Why sometimes and not others?
I may have to cut out eggplant altogether for a while and see if the neuro symptoms stay away. Other than that, I'm out of guesses. I would love it if anyone else had some insight into this. Is is just one of those inexplicable symptoms of ME/CFS that we simply have to deal with?
Tuesday, September 25, 2012
Thursday, September 20, 2012
The Problem with Getting Sick When You Have ME/CFS
I'm just now starting to get over a bug that I've been battling with for the last 11 days. Looking back over my health chart for this year, it appears that this most recent bug is the 7th to hit me since the beginning of the calendar year. We're in the 9th month. That means I'm averaging one cold/flu bug every 1.2 months. Mind you, this is on top of being regular ME/CFS-sick 100% of the time .... something I've heard referred to as being "sick on top of sick" (SOTOS). Before I got ME/CFS, I typically caught a bug about once or twice a year at most.
Taking a conservative estimate, I'd say the symptoms for each of these illnesses lasted on average about 10 days. That's 70 days of being SOTOS this year ... and we're only mid-way through September. So far, there have been 274 calendar days this year. That means I'm SOTOS 25% of time! One out of every four days! The numbers sound shocking...how could that be? But when I look back on the past 8.5 months, it seems about right.
Whenever I try to explain ME/CFS to someone--which is rarely--I focus on the immune compromising aspect. When I'm finished with this part of the explanation, the other person asks, "so, you get sick a lot." I usually agree, and move on to my next point. But's that's not really the whole story, is it? It's not just the frequency of infections. It's really a triple threat: frequency, duration, and severity.
Regular ol' every day bugs that would have, in the past, barely fazed me, now knock me out of commission. How do I know that these are just regular 'ol every day bugs? Because my healthy wife and daughter get them too. They're hardly affected at all...maybe a little runny nose or a slight cough, but they're no worse for the wear. I, on the other hand, am knocked out with intense flu-like symptoms. Regular colds become elevated to flu-like severity, and flus become a nightmare.
Since getting ME/CFS, I've had sore throats so bad that I'd have never thought such pain in one's throat could have been possible. It's the kind of pain that constantly demands your attention no matter how much you try to distract yourself.
I wonder sometimes if these serial illnesses are preventing me from making more progress toward remission. What if every time I catch one of these bugs, I'm sent back to square one? That's what it feels like sometimes. I wonder, if I could somehow string together enough non-sick days in a row, would I slowly creep back toward regular health?
Taking a conservative estimate, I'd say the symptoms for each of these illnesses lasted on average about 10 days. That's 70 days of being SOTOS this year ... and we're only mid-way through September. So far, there have been 274 calendar days this year. That means I'm SOTOS 25% of time! One out of every four days! The numbers sound shocking...how could that be? But when I look back on the past 8.5 months, it seems about right.
Whenever I try to explain ME/CFS to someone--which is rarely--I focus on the immune compromising aspect. When I'm finished with this part of the explanation, the other person asks, "so, you get sick a lot." I usually agree, and move on to my next point. But's that's not really the whole story, is it? It's not just the frequency of infections. It's really a triple threat: frequency, duration, and severity.
Regular ol' every day bugs that would have, in the past, barely fazed me, now knock me out of commission. How do I know that these are just regular 'ol every day bugs? Because my healthy wife and daughter get them too. They're hardly affected at all...maybe a little runny nose or a slight cough, but they're no worse for the wear. I, on the other hand, am knocked out with intense flu-like symptoms. Regular colds become elevated to flu-like severity, and flus become a nightmare.
Since getting ME/CFS, I've had sore throats so bad that I'd have never thought such pain in one's throat could have been possible. It's the kind of pain that constantly demands your attention no matter how much you try to distract yourself.
I wonder sometimes if these serial illnesses are preventing me from making more progress toward remission. What if every time I catch one of these bugs, I'm sent back to square one? That's what it feels like sometimes. I wonder, if I could somehow string together enough non-sick days in a row, would I slowly creep back toward regular health?
Thursday, September 13, 2012
Summary of 3rd Visit with Dr. C
I had my third visit with Dr. C yesterday. I reported that the Equilibrant has undoubtedly helped me feel better by about 5% on my personal rating scale. The increase may have been even more significant if I hadn't used the resulting increase in energy to engage in additional activities, leading to crashes. But all in all, my crashes seem to be shorter and less severe on the combination of Equilibrant and ImmunoStim.
The Inosine experiment, however, was a failure. For three weeks, I tried taking 2 Inosine tablets, 2 times daily, and I saw no improvement. This wasn't a surprise, as apparently only 40% of the approximately 70 patients who tried Inosine with Equilibrant saw any additional improvement.
The Inosine experiment, however, was a failure. For three weeks, I tried taking 2 Inosine tablets, 2 times daily, and I saw no improvement. This wasn't a surprise, as apparently only 40% of the approximately 70 patients who tried Inosine with Equilibrant saw any additional improvement.
Amantadine
Our next step is to try a drug called Amantadine, which is currently FDA-appvoved for Influenza and Parkinson's disease. Dr. C only recently began using it for ME patients, but he has seen some encouraging initial success after trying it on 20-30 patients.
In a prior post, I wrote a brief preview of Amantadine based on what Dr. C described in my previous visit. The gist of it is that Amantadine is supposed to prevent the double strand RNA viruses (enteroviruses) from replicating. It does this by blocking the virus from contacting the ribosome inside the cells, by interfering with the internal ribosome entry sequence (IRES). Dr. C explained that it is like blocking a key from its corresponding keyhole, thereby preventing the replication process from being turned on.
Side effects of Amantadine, according to Dr. C, are minimal. Any side effects reported were in "older patients" (not defined), and included slight cardiac arrhythmias.
I'm supposed to take Amantadine for one month. If I haven't seen any improvement after a month, I'm to quit and move on to the next drug...
Epivir
Epivir is an antiviral that was originally used to treat HIV patients. HIV patients often initially experienced significant improvement with Epivir, but the virus would then adapt to the Epivir after a year and the drug would lose it's effectiveness. For this reason, it was later used in combination with other antivirals to have a more long-lasting benefit. Dr. C believes it can have a more long-lasting benefit for PWME's as well, even without combining it with another drug.
Dr. C states that Epivir is a fairly safe and non-toxic drug, with few significant side effects being reported. The side effect known to Dr. C, lactic acidosis, is theoretical - Dr. C has never seen a patient who actually experienced it.
Dr. C's studies have shown that Epivir can be effective when combined with Equilibrant for some patients, and when combined with Inosine for others. It works in about 30% of the patients for whom he has prescribed it. When it does it work, it seems to work quite well.
Dr. C related several anecdotes in which patients had very good success with Epivir, including a story of one patient who was apparently brought back to nearly normal functioning by a combination of Epivir and another unspecified antiviral (Valcyte?) Dr. C cautioned however, that Epivir is not something that normally cures patients...in other words, if a patient improves and then stops taking the drug, the virus will come back just as strong as before.
Looking to the Future
Dr. C stated that if these two options don't work, then he will be "close" to running out of tricks. However, he is hopeful and excited about a class of drugs currently in development by the drug companies for the treatment of Hepatitis C. When I asked why he believes that a drug for Hepatitis C would be effective for ME/CFS, he explained that Hepatitis C is also caused by a double-strand RNA virus (enterovirus), thus any research on drugs developed for any other enteroviruses should help PWME's.
Dr. C noted, however, that a fresh wave of politics and in-fighting between the drug companies is delaying the development of these drugs. Apparently one drug company holds the secret to 1/2 of the magic formula, and another drug company holds the secret to the other half. Both companies have figured out that if they combine their recipes, they can produce a very lucrative drug. But so far they have not been able to agree on which of the two companies will produce the drug and how they will share the profits.
Sunday, September 9, 2012
Book Review: Love and Fatigue in America, by Roger King
*I've added a new review to my book review page. The full text of it is also copied below in this post.
The author of Love and Fatigue in America, Roger King, is an English novelist and professor who emigrated to the United States in the early 1990s to begin a new professorship at Eastern Washington University. At the time, he was getting over a relationship break-up and looking forward to a fresh start in America. But within his first year in Washington, he came down with ME/CFS and was soon forced to quit his position at the University. The rest of the book follows King's life in the United States over the next decade, as he migrates from state to state, trying to find love and at the same time battling ME/CFS.
Incidentally, as King explains in the introduction, the book is an "autobiographical novel," meaning that the majority of the book recounts true events in the author's life. Whenever he's unable to remember details (often due to brain fog), he liberally fills in the blanks with his best and, sometimes, most creative approximation of the true events and/or dialogue.
I'm having a hard time writing an objective review because, frankly, I loved it. In fact, I probably would have loved the book even before contracting ME/CFS because I've always found it interesting to learn emigrants' fresh impressions of America. King frequently finds new ways to give the American reader a fresh, humorous perspective on the county.
Then, of course, King's musings on life with ME/CFS are instantly recognizable. He has a way of summarizing the frustrations and paradoxes of life with ME/CFS in a way that will make any blogger (*ahem* myself) question whether there is anything new to say that King hasn't said better! I began reading the book by highlighting all of the particularly quotable passages about ME/CFS, but was soon forced to abandon this when many pages were covered top to bottom in highlights.
King's prose is pleasing and rhythmic--almost spartan at times--as he employs short sentences that are easily digestible to the brain-fogged reader. Few chapters are longer than 4 or 5 pages. Occasionally he breaks from prose altogether to give us a short chapter in verse. When I've seen this done in the past, it sometimes signals an author who is trying too hard to add "artistic merit" to their work, but King somehow makes it work.
If I were to find a criticism of the work, it would be that the 4th of 5 parts, entitled "Other States," in which King recounts a period of time where he wandered from state to state in a Jeep looking for his next home, seems disjointed and rushed. Perhaps this was meant to mirror the disjointed feeling of that time in his life, but he loses the narrative thread. In my opinion, the book would have been stronger without this section.
King is also quite frank about his sex life, which didn't bother me. But I can see how other, more sensitive readers might place certain passages under the category of TMI - too much information.
In my opinion, Love and Fatigue in America, should be on every PWME's to-read list. It's the first and only book I've found that combines an interest in ME/CFS with a more general interest in good writing and entertaining storytelling.
The author of Love and Fatigue in America, Roger King, is an English novelist and professor who emigrated to the United States in the early 1990s to begin a new professorship at Eastern Washington University. At the time, he was getting over a relationship break-up and looking forward to a fresh start in America. But within his first year in Washington, he came down with ME/CFS and was soon forced to quit his position at the University. The rest of the book follows King's life in the United States over the next decade, as he migrates from state to state, trying to find love and at the same time battling ME/CFS.
Incidentally, as King explains in the introduction, the book is an "autobiographical novel," meaning that the majority of the book recounts true events in the author's life. Whenever he's unable to remember details (often due to brain fog), he liberally fills in the blanks with his best and, sometimes, most creative approximation of the true events and/or dialogue.
I'm having a hard time writing an objective review because, frankly, I loved it. In fact, I probably would have loved the book even before contracting ME/CFS because I've always found it interesting to learn emigrants' fresh impressions of America. King frequently finds new ways to give the American reader a fresh, humorous perspective on the county.
Then, of course, King's musings on life with ME/CFS are instantly recognizable. He has a way of summarizing the frustrations and paradoxes of life with ME/CFS in a way that will make any blogger (*ahem* myself) question whether there is anything new to say that King hasn't said better! I began reading the book by highlighting all of the particularly quotable passages about ME/CFS, but was soon forced to abandon this when many pages were covered top to bottom in highlights.
King's prose is pleasing and rhythmic--almost spartan at times--as he employs short sentences that are easily digestible to the brain-fogged reader. Few chapters are longer than 4 or 5 pages. Occasionally he breaks from prose altogether to give us a short chapter in verse. When I've seen this done in the past, it sometimes signals an author who is trying too hard to add "artistic merit" to their work, but King somehow makes it work.
If I were to find a criticism of the work, it would be that the 4th of 5 parts, entitled "Other States," in which King recounts a period of time where he wandered from state to state in a Jeep looking for his next home, seems disjointed and rushed. Perhaps this was meant to mirror the disjointed feeling of that time in his life, but he loses the narrative thread. In my opinion, the book would have been stronger without this section.
King is also quite frank about his sex life, which didn't bother me. But I can see how other, more sensitive readers might place certain passages under the category of TMI - too much information.
In my opinion, Love and Fatigue in America, should be on every PWME's to-read list. It's the first and only book I've found that combines an interest in ME/CFS with a more general interest in good writing and entertaining storytelling.
Tuesday, September 4, 2012
Dr. Learner's Practitioner's Guide
Under my list of Reference Sites on the right side of the page, I've added a new link to Dr. Learner's Practitioner's guide. Here it is again.
Dr. Learner provides some excellent recommendations about the appropriate doses and frequency of antiviral treatment for ME/CFS. Based on his recommendations, I am not taking nearly enough valacylovir. He would advise that I take the same dose that I'm currently taking (1 gram), except four times a day, not one. I'll discuss this with Dr. W at my next appointment.
He also includes a section about treating co-infections such as Lyme and Mycoplasma Pneumonia, which he says must be treated first, before the anti-viral treatment begins. Again, he would apparently advise that the Doxycycline regimin that I'm taking for Mycoplasma isn't nearly enough.
Dr. Learner provides some excellent recommendations about the appropriate doses and frequency of antiviral treatment for ME/CFS. Based on his recommendations, I am not taking nearly enough valacylovir. He would advise that I take the same dose that I'm currently taking (1 gram), except four times a day, not one. I'll discuss this with Dr. W at my next appointment.
He also includes a section about treating co-infections such as Lyme and Mycoplasma Pneumonia, which he says must be treated first, before the anti-viral treatment begins. Again, he would apparently advise that the Doxycycline regimin that I'm taking for Mycoplasma isn't nearly enough.
Sunday, September 2, 2012
September Will Be Heart Rate Monitor Month
I've had a Polar FT4 heart rate monitor (HRM) for several weeks, but I haven't done much with it besides wear it occasionally for a few hours at a time and observe general patterns. Nothing too formal.
After watching the Pacific Fatigue Lab's webinar last week, I've decided to devote the next month to giving the HRM a full test. This will mean wearing it every day, all day, and stopping whatever I happen to be doing if my heart rate reaches a certain limit. When my heart rate falls back within acceptable limits, I can resume activity, but only as long as it stays below that limit. In my case, I'm starting off the month with the limit being 105 beats per minutes. That's six beats below my predicted AT based on the usual formula used for CFS patients.
If needed, I will adjust it even lower. At the end of the month, I'll review my monthly average and compare it to past monthly averages to see if the heart rate monitor helped improve my overall health rating and reduce the severity and frequency of crashes.
Having worn the HRM for the last two days, I can already tell it's not going to easy getting used to wearing this thing -- at least the chest strap part of it. I have a newfound respect for the discomfort women deal with in brassieres.
Meanwhile, I've calculated my monthly average for the month of August and it was the lowest since before I started Equilibrant in April: 76.93. This is not a surprise, as I pushed it WAY too hard in August, with several family obligations. But September should be a very mellow month and I should be able to stay home and rest every weekend. If the monitoring is working, I would hope to see a measurable increase in my health rating at the end of September. Either way, I'll post the results here on my blog.
I also note that I've now been keeping a daily health log for a full year. It's incredible how quickly that year went by. Before I got sick, I could have never imagined having the patience to record so many details of my daily life every single day. It's just another example of how, having lost the health that I took for granted, I'll go to almost any length to try to get some of it back.
After watching the Pacific Fatigue Lab's webinar last week, I've decided to devote the next month to giving the HRM a full test. This will mean wearing it every day, all day, and stopping whatever I happen to be doing if my heart rate reaches a certain limit. When my heart rate falls back within acceptable limits, I can resume activity, but only as long as it stays below that limit. In my case, I'm starting off the month with the limit being 105 beats per minutes. That's six beats below my predicted AT based on the usual formula used for CFS patients.
If needed, I will adjust it even lower. At the end of the month, I'll review my monthly average and compare it to past monthly averages to see if the heart rate monitor helped improve my overall health rating and reduce the severity and frequency of crashes.
Having worn the HRM for the last two days, I can already tell it's not going to easy getting used to wearing this thing -- at least the chest strap part of it. I have a newfound respect for the discomfort women deal with in brassieres.
Daily Health Rating Average - August
Meanwhile, I've calculated my monthly average for the month of August and it was the lowest since before I started Equilibrant in April: 76.93. This is not a surprise, as I pushed it WAY too hard in August, with several family obligations. But September should be a very mellow month and I should be able to stay home and rest every weekend. If the monitoring is working, I would hope to see a measurable increase in my health rating at the end of September. Either way, I'll post the results here on my blog.
I also note that I've now been keeping a daily health log for a full year. It's incredible how quickly that year went by. Before I got sick, I could have never imagined having the patience to record so many details of my daily life every single day. It's just another example of how, having lost the health that I took for granted, I'll go to almost any length to try to get some of it back.
Month Avg. Rating. Notes
Sept. 72.34
Oct. 77.16
Nov. 75.85 Started D-Ribose, Co-Q10, Acetyl-l carnitine, Vit. D3, and
vitamin powder
Dec. 80.39 Officially diagnosed; changed diet to low carb; added
ImmunoStim, NT Factor, and pro-biotics
Jan.'12 79.07 Added T3 thyroid, pregnenolone, and magnesium
Feb. 72.73 Added methylation protocol; crashed twice due to low
potassium and flu
Mar. 77.94 Added Famvir (antiviral) and Nystatin (for Candida); briefly
tried LDN
Apr. 75.50
May 82.03 Started Equilibrant, titrating from 2 - 4 tablets per day.
June 78.52 Upped Equilibrant dosage to 5 tab/day; got a cold early in
month; ImmunoStim ran out and is on back order.
July 81.12 Upped Equilibrant dosage to 6 tab/day, plus back on
ImmunoStim
Aug. 76.93 Stressful month, with two deaths in family; Travelled out of
town twice and hosted a party at house
Wednesday, August 29, 2012
Video Explains How to Use Heart Rate Monitor to Avoid Post Exertional Malaise in ME/CFS
This excellent recent webinar, which has been uploaded to YouTube, explains how to avoid crashes from post exertional malaise (PEM). It was hosted by the CFIDS Association of America and includes three panelists from the Pacific Fatigue Lab at the University of the Pacific in Sacramento, California. All three of the panelists appear to be highly regarded researchers in the field.
The total run time of the video is approximately an hour and 40 minutes. The first hour features the panel answering 10 frequently asked questions about PEM. The remainder features questions from the online audience. For those who don't have the time or mental energy to watch the whole video, I'd like to suggest skipping to a couple key highlights.
The total run time of the video is approximately an hour and 40 minutes. The first hour features the panel answering 10 frequently asked questions about PEM. The remainder features questions from the online audience. For those who don't have the time or mental energy to watch the whole video, I'd like to suggest skipping to a couple key highlights.
Question #6 - 25:30 to 29:30
This brief 4 minute segment explains what kinds of life events typically cause a crash, and emphasizes how the threshold is usually much lower than patients expect it to be. This might be a good segment to show to family and friends who have a hard time understanding why you need to avoid even relatively low key activities.
Question #7 - 30:24 to 42:30
This 12 minute segment explains how to use a heart rate monitor (HRM) to avoid crashing and to get off of the push/crash cycle. The best advice was to set your heart rate monitor's alarm to sound when your heart rate reaches 10 bpms below your anaerobic threshold (AT). When you hear the alarm go off, you're supposed to stop what you're doing until your heart rate goes down. The panelists say that one can control the frequency of crashes if they remain disciplined with this approach.
Somewhat frustratingly, the panelists make every effort to avoid suggesting a formula for determining one's AT. (Such formulas, however, are widely available in other places, such as here in Sue Jackson's blog). Rather, they emphasize that one can only determine his/her AT through careful trial and error with a HRM. They also state that a person's AT varies from day to day depending on whether the person is crashed. While that may be true, it's nice to use an AT formula as a starting point.
When pressed for a more specific answer later in the presentation, one of the panelists stated that most PWMEs have an AT between 90 and 115. She said it is rare for a PWME to have an AT above 115, but a few are in the 115 to 120 range. (See video at 128:00)
Other Notable Segments
44:40 - Patients can raise their AT over time if they are careful and avoid the push/crash cycle.
45:00 - How to prepare an exercise plan that stays within your limits.
47:50 - Standing requires 25% more energy than sitting. Any activity that can be done sitting should be done sitting. PWMEs need to save whatever energy they can and bank it for later.
49:30 - One panelists suggests that PWMEs should "use the power of blue" and obtain a handicapped parking pass. Even the evergy saved by walking 20 or 30 fewer yards is critical for PWMEs. The panelist notes that many PWMEs don't like to think of themselves as handicapped, but the objective data from exercise fitness tests shows that they are functioning at a lower level than people with severe heart conditions.
106:00 - There are no reliable studies that show that CoQ10 supplementation helps avoid or recover from PEM crashes.
132:00 - The only "treatment" the panelists believe may aid recovery from PEM, besides rest, is drinking water, particularly with small amounts of salt.
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