I have been going along at baseline or a little above for almost a month now. When things are going smoothly, I often forget to blog. January was the first month since I started blogging in about 2011 that I let an entire calendar month pass without blogging. That's a good sign.
Strangely I woke up this morning with my brain feeling inflamed. When I opened my eyes and looked around the room, the room felt like it was spinning. I could tell that getting up was going to be an adventure. It was. Of course, the feeling of brain inflammation and brain fog that I've been enduring this morning is nothing new. I've experienced it on and off since 2011. It's strange, however, that for the first time that I can remember, it has resulted in feeling dizzy. What has changed? I'm not sure if "vertigo" is the right term (I will have to look into that.)
[Edit: this wasn't POTS or OI. I've had those symptoms before. They come and go for me, thankfully. But this was worse when lying down, which is the opposite from when I've had POTS and OI.]
I haven't yet had time to research ME and dizziness. I seem to recall other patients complaining about it. So this is the first step--just acknowledging that it's an issue. If anyone has any insights into treatments to that help this condition, please let me know.
Showing posts with label Symptoms. Show all posts
Showing posts with label Symptoms. Show all posts
Wednesday, February 6, 2019
Monday, October 30, 2017
Gut issues went from 3 to 10
I visited my GP last week about something unrelated to my gut, but I happened to mention my ongoing problem with tenderness throughout my abdomen. As I wrote about before, the physician's assistant (PA) who initially diagnosed it said that the cause of the discomfort was likely the pancreas and/or spleen due to my ongoing Epstein Barr infection. The pain and tenderness started in the last week of July and has been intermittent since.
My GP palpated the area where the pain is the worst (just under the bottom of my left rib cage) and she insisted that it is actually my stomach. Thinking back a couple weeks earlier to a Dr. C appointment, he suggested the same thing but I didn't pay much attention. And now, thinking about the pain and tenderness more, I'm fairly certain my GP and Dr. C are right -- it's the gut, not the pancreas. (My reasons are too many to cover fully here, but one of the main ones is that, on bad days, the swelling and tenderness is all throughout my entire abdomen, from the bottom of the rib cage to the pelvis, both sides.)
For most of my life with ME/CFS (since 2011), gut disturbances have been pretty far down the list of severity of symptoms (notwithstanding the initial onset period). That's not to say I didn't have gut problems, but I usually had more painful or debilitating symptoms that I had to deal with. Now it seems the gut disturbances are the worst--maybe tied with the overall fatigue.
Right now, it almost feels like my entire abdomen could burst out of the skin. The whole area feels swollen and bloated. "Bodily functions" are a little off, but not in a way that seems to match the severity of the pressure I feel. No loss of appetite. I've now spoken with three doctors about this issue and none of them have anything useful to add or seem particularly concerned. (That's good I guess?)
My GP wrote a script for an acid-reducing medication but I don't feel that over-production of acid is remotely close to being the problem. I didn't fill the prescription. In the meantime, I've tried various diet alterations (although not in a very systematic way) and can't find any obvious cause in food. I might have wondered if there's a connection between the gut issues and my increased dose of Valacyclovir (3G/day), but the problems started months before the increased dose.
I have an appointment with a gastroenterologist in the fourth week of November, and I am hoping to obtain some clarification from him. Could this be just another strange symptom of ME/CFS that I have to live with until it mysteriously goes away?
___________________
In the mean time, in light of my ongoing positive Epstein Bar Virus (EBV) IgM tests, I went back and looked at my old lab results. I knew that I had a positive test for EBV IgM (active infection) back in 2005, way before I got ME/CFS. And I also thought I knew I had been thoroughly tested for EBV since falling ill with ME/CFS in 2011. But when I looked back at my records of blood tests where EBV was tested post-diagnosis (twice in 2012, and once in 2013), I saw that the doctors only ordered tests for IgG antibodies. My memory was only that IgG was positive, which led me to assume we'd also tested IgM and that was negative. But actually, until this year, nobody ever tested my EBV IgM titers. How could this oversight have happened?
So now I'm wondering if I've had positive IgM titers for EBV for a very long time. I feel frustrated, but also a little hopeful that if I can somehow treat the EBV and bring IgM titers back in range, I might feel a little better. So far though, that's not going so great. I have an appointment with an infections disease specialist in two days. I'm doubtful she will be of much help, but I'm going to give her a chance nonetheless.
My GP palpated the area where the pain is the worst (just under the bottom of my left rib cage) and she insisted that it is actually my stomach. Thinking back a couple weeks earlier to a Dr. C appointment, he suggested the same thing but I didn't pay much attention. And now, thinking about the pain and tenderness more, I'm fairly certain my GP and Dr. C are right -- it's the gut, not the pancreas. (My reasons are too many to cover fully here, but one of the main ones is that, on bad days, the swelling and tenderness is all throughout my entire abdomen, from the bottom of the rib cage to the pelvis, both sides.)
For most of my life with ME/CFS (since 2011), gut disturbances have been pretty far down the list of severity of symptoms (notwithstanding the initial onset period). That's not to say I didn't have gut problems, but I usually had more painful or debilitating symptoms that I had to deal with. Now it seems the gut disturbances are the worst--maybe tied with the overall fatigue.
Right now, it almost feels like my entire abdomen could burst out of the skin. The whole area feels swollen and bloated. "Bodily functions" are a little off, but not in a way that seems to match the severity of the pressure I feel. No loss of appetite. I've now spoken with three doctors about this issue and none of them have anything useful to add or seem particularly concerned. (That's good I guess?)
My GP wrote a script for an acid-reducing medication but I don't feel that over-production of acid is remotely close to being the problem. I didn't fill the prescription. In the meantime, I've tried various diet alterations (although not in a very systematic way) and can't find any obvious cause in food. I might have wondered if there's a connection between the gut issues and my increased dose of Valacyclovir (3G/day), but the problems started months before the increased dose.
I have an appointment with a gastroenterologist in the fourth week of November, and I am hoping to obtain some clarification from him. Could this be just another strange symptom of ME/CFS that I have to live with until it mysteriously goes away?
___________________
In the mean time, in light of my ongoing positive Epstein Bar Virus (EBV) IgM tests, I went back and looked at my old lab results. I knew that I had a positive test for EBV IgM (active infection) back in 2005, way before I got ME/CFS. And I also thought I knew I had been thoroughly tested for EBV since falling ill with ME/CFS in 2011. But when I looked back at my records of blood tests where EBV was tested post-diagnosis (twice in 2012, and once in 2013), I saw that the doctors only ordered tests for IgG antibodies. My memory was only that IgG was positive, which led me to assume we'd also tested IgM and that was negative. But actually, until this year, nobody ever tested my EBV IgM titers. How could this oversight have happened?
So now I'm wondering if I've had positive IgM titers for EBV for a very long time. I feel frustrated, but also a little hopeful that if I can somehow treat the EBV and bring IgM titers back in range, I might feel a little better. So far though, that's not going so great. I have an appointment with an infections disease specialist in two days. I'm doubtful she will be of much help, but I'm going to give her a chance nonetheless.
Tuesday, May 30, 2017
Hand and foot pain
The pain in my hands and fingers that I wrote about in my last post continues to trouble me. I am becoming less and less convinced the pain is due to re-activated Shingles. For one, the pain has migrated to my left hand too. From what I understand, Shingles will never cross over to the other side of the body--it always stays on one side. Also, I never did develop a rash this time, and the problem doesn't seem to be improving with time.
A couple weeks ago, I started feeling the same pain that I have in my fingers in my toes too. And even when my toes aren't hurting, both of my feet feel twitchy. It's a difficult sensation to describe because my feet and toes never actually twitch. They simply feel twitchy. I don't know if there's a word for that sensation, but it obviously has something to do with the nerves.
At the same time, I have also been feeling that pain and twitchy-ness in my throat. When it's particularly bad, it also feels like there is a lump in my throat and it feels like it's difficult to swallow.
The one bright spot is that the headaches and brain fog that accompanies this recent cluster of symptoms at the onset has disappeared. That only lasted the first week or so, which is a huge relief.
Because of this new cluster of symptoms, I recently made an appointment with a neurologist. (She is booked until late June, so I have to wait a little while.) I have never before consulted a neurologist before, but I think it's time for some testing. Other ME patient friends have warned me not to expect much. I do understand that the neurologist may simply run a couple basic tests and that these basic tests aren't likely to result in useful information. I understand that's a possible, maybe even likely, outcome but I need to try something.
A couple weeks ago, I started feeling the same pain that I have in my fingers in my toes too. And even when my toes aren't hurting, both of my feet feel twitchy. It's a difficult sensation to describe because my feet and toes never actually twitch. They simply feel twitchy. I don't know if there's a word for that sensation, but it obviously has something to do with the nerves.
At the same time, I have also been feeling that pain and twitchy-ness in my throat. When it's particularly bad, it also feels like there is a lump in my throat and it feels like it's difficult to swallow.
The one bright spot is that the headaches and brain fog that accompanies this recent cluster of symptoms at the onset has disappeared. That only lasted the first week or so, which is a huge relief.
Because of this new cluster of symptoms, I recently made an appointment with a neurologist. (She is booked until late June, so I have to wait a little while.) I have never before consulted a neurologist before, but I think it's time for some testing. Other ME patient friends have warned me not to expect much. I do understand that the neurologist may simply run a couple basic tests and that these basic tests aren't likely to result in useful information. I understand that's a possible, maybe even likely, outcome but I need to try something.
Thursday, March 30, 2017
Hand and finger pain / numbness in ME/CFS?
I've said this before, but every time I think I have experienced every possible symptom that ME/CFS can throw at me, a new one arises that I would have never expected.
Starting on Monday of this week, I descended into a crash. Most of the symptoms of this crash have been typical for me. It is clearly a body-wide inflammation event of some kind. First, my energy takes a dive -- that's a given. Then, I experience upper respiratory inflammation. This comes in the form of three symptoms which, for me, almost always go together: shortness of breath, post-nasal drip, and an itchiness in my nose which sometimes results in sneezing. (This whole triad seems suspiciously allergic in nature, but allergy tests have never shown anything significant.) Some crashes stop there for me. It's not the worst kind of crash if it "only" involves a dip in energy and the upper respiratory symptoms.
But when a crash gets worse, I usually also get dizziness upon standing and peripheral neuropathy (my hands become uncoordinated and slightly numb.) Usually when the crash hits this stage, I also experience tachycardia and a feeling of pressure in the skull (like brain swelling). I have that now as well.
But this time, in addition to the numbness in the hands, it has actually progressed to pain in the hands, especially in the finger tips. It hurts to type this post. It hurts to do almost anything that I typically do with my hands: Open a bottle, button a shirt, wash my hands.
Starting about a year ago, I noticed that whenever I washed my hands, the act of rubbing my hands together produced an uncomfortable sensation; almost pain, but not quite. It was a minor discomfort but one of those things that registers with a "hmm, that's odd," before forgetting about it.
Now, with this current crash, my finger tips have become painful to the touch, and the palms have become extremely sensitive. Now when I rub the palms together while washing, it actually hurts. It's much more than discomfort now.
I searched the Internet and found very little about finger pain in ME/CFS. There were a few other people noting the symptom on various message board threads (e.g. 1, 2), but nothing about what causes it or what can be done to treat it. This is frustrating.
Please, if anyone knows what can be done about this, or where I can learn more about the cause or management of this symptom, please leave a comment below. If/when I learn more about it, I'll write an updated post.
Starting on Monday of this week, I descended into a crash. Most of the symptoms of this crash have been typical for me. It is clearly a body-wide inflammation event of some kind. First, my energy takes a dive -- that's a given. Then, I experience upper respiratory inflammation. This comes in the form of three symptoms which, for me, almost always go together: shortness of breath, post-nasal drip, and an itchiness in my nose which sometimes results in sneezing. (This whole triad seems suspiciously allergic in nature, but allergy tests have never shown anything significant.) Some crashes stop there for me. It's not the worst kind of crash if it "only" involves a dip in energy and the upper respiratory symptoms.
But when a crash gets worse, I usually also get dizziness upon standing and peripheral neuropathy (my hands become uncoordinated and slightly numb.) Usually when the crash hits this stage, I also experience tachycardia and a feeling of pressure in the skull (like brain swelling). I have that now as well.
But this time, in addition to the numbness in the hands, it has actually progressed to pain in the hands, especially in the finger tips. It hurts to type this post. It hurts to do almost anything that I typically do with my hands: Open a bottle, button a shirt, wash my hands.
Starting about a year ago, I noticed that whenever I washed my hands, the act of rubbing my hands together produced an uncomfortable sensation; almost pain, but not quite. It was a minor discomfort but one of those things that registers with a "hmm, that's odd," before forgetting about it.
Now, with this current crash, my finger tips have become painful to the touch, and the palms have become extremely sensitive. Now when I rub the palms together while washing, it actually hurts. It's much more than discomfort now.
I searched the Internet and found very little about finger pain in ME/CFS. There were a few other people noting the symptom on various message board threads (e.g. 1, 2), but nothing about what causes it or what can be done to treat it. This is frustrating.
Please, if anyone knows what can be done about this, or where I can learn more about the cause or management of this symptom, please leave a comment below. If/when I learn more about it, I'll write an updated post.
Tuesday, July 26, 2016
Suddenly, I have skin sensitivity
I have no idea if this is related to ME, but for the last 3 days, I have suddenly developed skin sensitivity in three areas on my body: the right side of my stomach, the right side of my lower back (directly opposite the patch on the stomach), and an area on the back of my right thigh. There are no visible scratches, rashes, or bumps. In terms of the pain sensation, it feels like those areas have been scratched by sandpaper, and now they are sensitive even to the contact of clothing over them. I applied a topical over-the-counter steroid this morning, but it hasn't seemed to help.
I can't recall ever reading that sensitive skin was a major symptom of ME, but then again, I've probably read and forgotten an encyclopedia's worth of information on ME in the last 5 years. A very brief Google search revealed that these types of non-visible skin irritations occur for all sorts of reasons: an irritant, such as new soap, new laundry detergent, contact with chemicals, airborne pollutants, or simply stress.
None of these factors seem to fit. I did switch to a new brand of soap about three weeks ago, so it's possible the soap had a delayed effect. More likely, I think I probably overdid the activity this weekend and my body is reacting with increased cortisol and, thus, stress. I hope this doesn't become a regular part of my entomology.
I can't recall ever reading that sensitive skin was a major symptom of ME, but then again, I've probably read and forgotten an encyclopedia's worth of information on ME in the last 5 years. A very brief Google search revealed that these types of non-visible skin irritations occur for all sorts of reasons: an irritant, such as new soap, new laundry detergent, contact with chemicals, airborne pollutants, or simply stress.
None of these factors seem to fit. I did switch to a new brand of soap about three weeks ago, so it's possible the soap had a delayed effect. More likely, I think I probably overdid the activity this weekend and my body is reacting with increased cortisol and, thus, stress. I hope this doesn't become a regular part of my entomology.
Thursday, April 28, 2016
My Latest Doctor's Appointment - Trying New Treatments
I had another appointment with my integrative medicine doctor yesterday, Dr. M. Since my last post in March, the shortness of breath (SOB) and post nasal drip (PND), which I thought had finally gone away, came back. But in the meantime, some very interesting clues arose suggesting a possible cause of this frustrating set of symptoms.
In early March, I became sick with a very bad cold, the main symptom of which was a hacking cough. I coughed so hard I strained the ligaments in my ribs, making further coughing painful. During the 10 day span that I had the cough, I didn't have any SOB or PND. (That's when I wrote my last blog post.) A couple of days after the cough resolved, the SOB and PND returned. Then, because of my weak immune system, the cough returned for another week, and the SOB/PND went away. Then this cycle repeated a third time! It was almost the perfect cause/effect experiment.
That brings us to present day. I stopped coughing again about 3 days ago, and the SOB/PND returned again yesterday (the day of my appointment with Dr. M.)
But there's more...
I noticed that, very often, when I do something that should be good for my immune system, the SOB/PND becomes triggered. For instance, nearly every time I take a zinc lozenge (but not always), the SOB/PND becomes worse immediately. The connection with zinc is unmistakable.
Also, about once every two weeks, I am suddenly and for no discernible reason, able to catch an extra good night of sleep. I will sleep maybe 9 or 10 hours and wake up knowing, feeling, that it was an extra deep sleep. It's a hard feeling to describe, but it's unmistakable when it happens. The strange thing is, these nights of "power sleep" are always followed by a bad day of SOB/PND. This seems very counter-intuitive because sleep is supposed to be good for the immune system.
All of this leads me to believe that the SOB/PND is some sort of over activation of the immune system — an allergic or autoimmune-type response. It's as if my immune system almost has to be stressed a bit in order to avoid SOB/PND, or in the case of my recent cold, to be "distracted" by something else.
When I explained this theory to Dr. M, she neither supported it nor rejected it. She was simply pensive, and acknowledged the possibility that there could be something accurate in my theory (or perhaps she didn't want to hurt my feelings.)
As I've written before, Dr. M believes, foremost, that I have chronic Lyme disease and chronic babesia. I've discussed my skepticism of this diagnosis with her and she understands. At the same time, I can't completely rule out her diagnosis.
One of the hallmarks of babesia infection is cyclical SOB, like I have. Dr. M has previously raised the possibility of me taking an anti-babesia medication called Mepron, but I have always demurred. This time, after researching Mepron and understanding more about its side affects (mild) and risks (minor), I agreed to try it for 1-2 months to see if it will help decrease the SOB/PND. So that is the current plan. I will fill the prescription this weekend.
_____________
We are also in the process of decreasing my daily T3 thyroid dose. My previous doctor had increased the dose so high (75mcg) that my body nearly ceased all natural production of Thyroid Stimulating Hormone (TSH) and T4 (thyroid hormone precursor). Dr. M wants to decrease T3 to the point where TSH and T4 begin production again. We've already decreased T3 from 75 to 40 mcg. and I still feel fine.
Dr. M also wants me to increase my infrared sauna usage from 1-2x to 3-4x/week for detoxification. (ME/CFS patients are thought to have broken or defective detoxification pathways.) Although I once used my sauna almost daily for an 8 month period, right now I simply don't feel like I have the patience to increase my usage back to 3-4x per week. I will try nonetheless. She also stressed the importance of continuing to take Phosphatidyl Choline, which I will.
In early March, I became sick with a very bad cold, the main symptom of which was a hacking cough. I coughed so hard I strained the ligaments in my ribs, making further coughing painful. During the 10 day span that I had the cough, I didn't have any SOB or PND. (That's when I wrote my last blog post.) A couple of days after the cough resolved, the SOB and PND returned. Then, because of my weak immune system, the cough returned for another week, and the SOB/PND went away. Then this cycle repeated a third time! It was almost the perfect cause/effect experiment.
That brings us to present day. I stopped coughing again about 3 days ago, and the SOB/PND returned again yesterday (the day of my appointment with Dr. M.)
But there's more...
I noticed that, very often, when I do something that should be good for my immune system, the SOB/PND becomes triggered. For instance, nearly every time I take a zinc lozenge (but not always), the SOB/PND becomes worse immediately. The connection with zinc is unmistakable.
Also, about once every two weeks, I am suddenly and for no discernible reason, able to catch an extra good night of sleep. I will sleep maybe 9 or 10 hours and wake up knowing, feeling, that it was an extra deep sleep. It's a hard feeling to describe, but it's unmistakable when it happens. The strange thing is, these nights of "power sleep" are always followed by a bad day of SOB/PND. This seems very counter-intuitive because sleep is supposed to be good for the immune system.
All of this leads me to believe that the SOB/PND is some sort of over activation of the immune system — an allergic or autoimmune-type response. It's as if my immune system almost has to be stressed a bit in order to avoid SOB/PND, or in the case of my recent cold, to be "distracted" by something else.
When I explained this theory to Dr. M, she neither supported it nor rejected it. She was simply pensive, and acknowledged the possibility that there could be something accurate in my theory (or perhaps she didn't want to hurt my feelings.)
As I've written before, Dr. M believes, foremost, that I have chronic Lyme disease and chronic babesia. I've discussed my skepticism of this diagnosis with her and she understands. At the same time, I can't completely rule out her diagnosis.
One of the hallmarks of babesia infection is cyclical SOB, like I have. Dr. M has previously raised the possibility of me taking an anti-babesia medication called Mepron, but I have always demurred. This time, after researching Mepron and understanding more about its side affects (mild) and risks (minor), I agreed to try it for 1-2 months to see if it will help decrease the SOB/PND. So that is the current plan. I will fill the prescription this weekend.
_____________
We are also in the process of decreasing my daily T3 thyroid dose. My previous doctor had increased the dose so high (75mcg) that my body nearly ceased all natural production of Thyroid Stimulating Hormone (TSH) and T4 (thyroid hormone precursor). Dr. M wants to decrease T3 to the point where TSH and T4 begin production again. We've already decreased T3 from 75 to 40 mcg. and I still feel fine.
Dr. M also wants me to increase my infrared sauna usage from 1-2x to 3-4x/week for detoxification. (ME/CFS patients are thought to have broken or defective detoxification pathways.) Although I once used my sauna almost daily for an 8 month period, right now I simply don't feel like I have the patience to increase my usage back to 3-4x per week. I will try nonetheless. She also stressed the importance of continuing to take Phosphatidyl Choline, which I will.
Sunday, March 20, 2016
Personal Update: Symptoms come and go without explanation
Since September, 2015, I have dealt with severe shortness of breath (SOB) and post-nasal drip (PND), which always waxed and waned in unison. The two symptoms were clearly tied together somehow. From September through January, the symptoms gradually grew worse and more frequent, to the point where they became constant companions. By January, the symptoms were present every day. The only variable was the severity.
I did everything I could to make sense of the symptoms. I meticulously charted my activities, food, supplements, and other inputs, trying to isolate a variable as the cause of the SOB/PND. I visited 4 or 5 doctors. In the end, I found nothing. It was frustrating.
Then in late February, they simply went away. They're not completely gone form my life--I still get them occasionally. But now instead of every day, I get them maybe once every 5 or 6 days. And when I do get them, they seem less severe.
Once again, ME/CFS has proven maddeningly difficult to explain. I have only two theories: (1) The symptoms were yet another example of inflammatory cytokines attacking one area of the body for a while before moving on to another. This seems to happened constantly in my experience with ME/CFS. Or, (2) I picked up a viral respiratory infection in September 2015 that my weakened immune system took 7 months to clear. I think the first explanation is more likely because the second doesn't explain the periodicity (waxing and waning) of the symptoms.
Now it seems the inflammation may be moving back to my nervous system. I'm beginning to have "neuro symptoms" again--lack of coordination in the extremities along with brain fog.
_________________
I had the flu last week. It had been going around my family for two weeks and it finally hit me. I went to the doctor within 13 hours of the first symptoms and obtained a prescription of Tamiflu. Then I took to the ME/CFS message boards to learn if there was any reason I shouldn't try Tamiflu. There were some hints of possibilities of complications with ME/CFS and Tamiflu, but nothing concrete enough to dissuade me.
In the end, I think the Tamiflu helped. Other, more healthy people, were incapacitated for a week or more with this flu. I was done with the flu symptoms by day 3 or 4, although the flu did somehow evolve into or pave the way for a bacterial respiratory infection (like it did for 3 of my family members too.) It was a strange bug.
So again I ended up taking antibiotics (Amoxicillin). It seems just about the longest period I have been able to do without a serious bacterial infection requiring antibiotics, since 2011, is about 1 year. I cannot seem to break that one year barrier. I would very much like to avoid antibiotics but, when you need them, you need them.
I did everything I could to make sense of the symptoms. I meticulously charted my activities, food, supplements, and other inputs, trying to isolate a variable as the cause of the SOB/PND. I visited 4 or 5 doctors. In the end, I found nothing. It was frustrating.
Then in late February, they simply went away. They're not completely gone form my life--I still get them occasionally. But now instead of every day, I get them maybe once every 5 or 6 days. And when I do get them, they seem less severe.
Once again, ME/CFS has proven maddeningly difficult to explain. I have only two theories: (1) The symptoms were yet another example of inflammatory cytokines attacking one area of the body for a while before moving on to another. This seems to happened constantly in my experience with ME/CFS. Or, (2) I picked up a viral respiratory infection in September 2015 that my weakened immune system took 7 months to clear. I think the first explanation is more likely because the second doesn't explain the periodicity (waxing and waning) of the symptoms.
Now it seems the inflammation may be moving back to my nervous system. I'm beginning to have "neuro symptoms" again--lack of coordination in the extremities along with brain fog.
_________________
I had the flu last week. It had been going around my family for two weeks and it finally hit me. I went to the doctor within 13 hours of the first symptoms and obtained a prescription of Tamiflu. Then I took to the ME/CFS message boards to learn if there was any reason I shouldn't try Tamiflu. There were some hints of possibilities of complications with ME/CFS and Tamiflu, but nothing concrete enough to dissuade me.
In the end, I think the Tamiflu helped. Other, more healthy people, were incapacitated for a week or more with this flu. I was done with the flu symptoms by day 3 or 4, although the flu did somehow evolve into or pave the way for a bacterial respiratory infection (like it did for 3 of my family members too.) It was a strange bug.
So again I ended up taking antibiotics (Amoxicillin). It seems just about the longest period I have been able to do without a serious bacterial infection requiring antibiotics, since 2011, is about 1 year. I cannot seem to break that one year barrier. I would very much like to avoid antibiotics but, when you need them, you need them.
Monday, August 24, 2015
A New Phase of My Illness
Looking back at my daily healthy chart (averaged by month), I can see that I clearly hit a peak in March of this year. That was my highest rated month since getting ME/CFS in June, 2011. From June 2011 to March, 2015, I was steadily improving. Naturally, there were setbacks, but the overall trend was improvement. The improvement trend seems to have reversed itself after March. It's only been about five months since then (and July was actually a pretty good month), so it may be too early to call this a reversal. But I've also noticed that my symptoms have changed during that time.
The good news is that my symptoms have become more consistent and predictable. The bad news is that they seem to be present more often than, for example, this time last year. Since March, my main symptoms have been sinus issues, shortness of breath, and swollen lymph nodes in the neck.
For years, I've seen and read of other ME/CFS patients on message boards who dealt with sinus issues, and I thought, "how strange that I don't have any sinus issues." Well, now I do. Every day. Each day, for at a minimum of 2 to 3 hours, and sometimes all day, I get the sniffles. Never a fully clogged nose - just the sniffles. It's a consistent post-nasal drip. It often dissipates as quickly as it arrives, for no apparent reason. Netti pot and other nasal sprays have been ineffective.
The sniffles always come with shortness of breath (SOB). The two symptoms are somehow intertwined. With the shortness of breath, even though I am breathing normally, at a normal pace, it feels as if I'm not getting enough air. If I stand in one place for more than a couple of minutes, the shortness of breath becomes worse. It feels as if my circulatory system is struggling to get oxygen to all parts of my body. Lying down flat, or simply moving around and improving circulation seems to help the condition, but not fully alleviate it. This may be why, every time I have a blood test, my red blood cell count is sky high. I have the red blood cell count of someone who lives at high altitude. For a while, I dismiss this as a side effect of the Testosterone injections I was taking, but the condition continued even after I stopped taking Testosterone.
SOB is not a new symptom for me at all. It was one of my original "big three" symptoms. But what is new is that (a) it now always comes with the sniffles, and (b) I get it every day. For long periods of time, sometimes months at a time, SOB would be gone from my symptoms list. Now it is an every day experience.
And the final symptoms is swollen lymph nodes. This is another one I've had periodically in the past, but very rarely, and never for more than a couple weeks at a time. Now I've had it every single day (to at least some degree) for the past two months. So it feels like I've entered a new stage of the disease. My doctor can clearly feel the swelling, and sometimes it's so prominent that it becomes uncomfortable to turn my neck.
But the good news is that the consistency of the first two symptoms (sinus and SOB) give me something to focus on. For so long, the symptoms would change so frequently--from day to day, week to week, and month to month--that there was no point in me searching for answers based on symptoms. I instead had to take a "macro view," simply searching for treatments to ME/CFS in general. Now I wonder if I can be categorized in a subset of ME/CFS--if I can use the new consistency in my symptoms to focus on what, specifically, might be at the root of my problems. I still hold out hope sometimes that ME/CFS might be a misdiagnosis, and that the correct diagnosis might be something treatable.
The good news is that my symptoms have become more consistent and predictable. The bad news is that they seem to be present more often than, for example, this time last year. Since March, my main symptoms have been sinus issues, shortness of breath, and swollen lymph nodes in the neck.
For years, I've seen and read of other ME/CFS patients on message boards who dealt with sinus issues, and I thought, "how strange that I don't have any sinus issues." Well, now I do. Every day. Each day, for at a minimum of 2 to 3 hours, and sometimes all day, I get the sniffles. Never a fully clogged nose - just the sniffles. It's a consistent post-nasal drip. It often dissipates as quickly as it arrives, for no apparent reason. Netti pot and other nasal sprays have been ineffective.
The sniffles always come with shortness of breath (SOB). The two symptoms are somehow intertwined. With the shortness of breath, even though I am breathing normally, at a normal pace, it feels as if I'm not getting enough air. If I stand in one place for more than a couple of minutes, the shortness of breath becomes worse. It feels as if my circulatory system is struggling to get oxygen to all parts of my body. Lying down flat, or simply moving around and improving circulation seems to help the condition, but not fully alleviate it. This may be why, every time I have a blood test, my red blood cell count is sky high. I have the red blood cell count of someone who lives at high altitude. For a while, I dismiss this as a side effect of the Testosterone injections I was taking, but the condition continued even after I stopped taking Testosterone.
SOB is not a new symptom for me at all. It was one of my original "big three" symptoms. But what is new is that (a) it now always comes with the sniffles, and (b) I get it every day. For long periods of time, sometimes months at a time, SOB would be gone from my symptoms list. Now it is an every day experience.
And the final symptoms is swollen lymph nodes. This is another one I've had periodically in the past, but very rarely, and never for more than a couple weeks at a time. Now I've had it every single day (to at least some degree) for the past two months. So it feels like I've entered a new stage of the disease. My doctor can clearly feel the swelling, and sometimes it's so prominent that it becomes uncomfortable to turn my neck.
But the good news is that the consistency of the first two symptoms (sinus and SOB) give me something to focus on. For so long, the symptoms would change so frequently--from day to day, week to week, and month to month--that there was no point in me searching for answers based on symptoms. I instead had to take a "macro view," simply searching for treatments to ME/CFS in general. Now I wonder if I can be categorized in a subset of ME/CFS--if I can use the new consistency in my symptoms to focus on what, specifically, might be at the root of my problems. I still hold out hope sometimes that ME/CFS might be a misdiagnosis, and that the correct diagnosis might be something treatable.
Monday, June 15, 2015
My new headache symptoms - another clue
I've figured out what this new headache symptom is about. Since my last blog post, in which I wrote about recent headaches, these new headaches have come and gone every five or six days. They usually last about 2 days.
My first clue to their origin was that these headaches are accompanied by a tremendous tightening in my shoulders and neck. This is not the typical tension seen in people who spend large blocks of time in desk chairs. I've experienced that lesser tension all of my adult life -- it is a minor annoyance. This is something entirely different. The tension in my neck and shoulder muscles is easily palpable to myself and others. At onset, over the course of an hour, knots the size of grapes form in my shoulder muscles.
A legal assistant in my office is a long-time sufferer of tension headaches. She states that I'm suffering classic tension headache symptoms. Apparently tension headaches start in the shoulders and neck. These muscles, in turn, pull on the muscles connected to the top of the skull, producing a headache. When she explained this, the proverbial light bulb went on. A little Googling confirmed her assessment.
Why, then, after four years of ME/CFS, has this new symptom emerged? What I believe is happening is the inflammation that is a hallmark of this disease has taken up occasional residence in a new part of my body. At the risk of oversimplifying this complex disease, it has always been a matter of inflammation (possibly from cytokine "storms") forming in different parts of my body. When it would hit my groin, I'd feel groin pain. Kidneys; kidney pain. Lungs; shortness of breath. Brain; brain fog. Etc.
I believe that now, for unknown reasons, the inflammation has started to attack my shoulders and neck. This results in tension headaches. I'm actually OK with this as long as the net inflammation in my body isn't increasing. If the inflammation is hitting my shoulders because it has "left" another part of my body, I can live with that. I haven't had true groin pain since about February, so perhaps the cytokine storms have moved on? Joke if you will about the troglodytic nature of men, but I'd rather have the headaches than the groin paid.
[When this new symptom first appeared in the week before my vacation, it was accompanied by brain fog and swollen lymph nodes. Since then, the brain fog has not been a part of it, and the glandular swelling, only a little. I think the contemporaneity of the brain fog during that week was coincidence.]
My first clue to their origin was that these headaches are accompanied by a tremendous tightening in my shoulders and neck. This is not the typical tension seen in people who spend large blocks of time in desk chairs. I've experienced that lesser tension all of my adult life -- it is a minor annoyance. This is something entirely different. The tension in my neck and shoulder muscles is easily palpable to myself and others. At onset, over the course of an hour, knots the size of grapes form in my shoulder muscles.
A legal assistant in my office is a long-time sufferer of tension headaches. She states that I'm suffering classic tension headache symptoms. Apparently tension headaches start in the shoulders and neck. These muscles, in turn, pull on the muscles connected to the top of the skull, producing a headache. When she explained this, the proverbial light bulb went on. A little Googling confirmed her assessment.
Why, then, after four years of ME/CFS, has this new symptom emerged? What I believe is happening is the inflammation that is a hallmark of this disease has taken up occasional residence in a new part of my body. At the risk of oversimplifying this complex disease, it has always been a matter of inflammation (possibly from cytokine "storms") forming in different parts of my body. When it would hit my groin, I'd feel groin pain. Kidneys; kidney pain. Lungs; shortness of breath. Brain; brain fog. Etc.
I believe that now, for unknown reasons, the inflammation has started to attack my shoulders and neck. This results in tension headaches. I'm actually OK with this as long as the net inflammation in my body isn't increasing. If the inflammation is hitting my shoulders because it has "left" another part of my body, I can live with that. I haven't had true groin pain since about February, so perhaps the cytokine storms have moved on? Joke if you will about the troglodytic nature of men, but I'd rather have the headaches than the groin paid.
[When this new symptom first appeared in the week before my vacation, it was accompanied by brain fog and swollen lymph nodes. Since then, the brain fog has not been a part of it, and the glandular swelling, only a little. I think the contemporaneity of the brain fog during that week was coincidence.]
Tuesday, October 21, 2014
Chronic sinusitis and candida overgrowth
I visited my other ME doctor yesterday, Dr. W. By now my visits with Dr. W are very routine - I go every five months, which is the longest he will allow me to stay away between visits. He says the licensing board won't allow him to prescribe maintenance-type medications to patients with longer intervals in between check-up visits. So at this point my visits with Dr. W are simply necessities to maintain access to my prescriptions of T3, Testosterone, and Valacyclovir.
In terms of treatment plans, Dr. W is mostly out of ideas and I think I have plateaued under his care. (Pardon the use of "plateau" as a verb.) So I am looking for another local specialist who will (1) maintain the treatments from Dr. W that did work, and (2) introduce some new ideas to push me through the plateau.
In the meantime, I discussed with Dr. W that I have been taking antibiotics for almost two months to deal with ongoing prostatitis. We noted that my candida problem seems to have come back because of the antibiotics. My tongue is again coated with a white film - more so than in recent months.
At the same time, Dr. W noticed that I was sniffling. It's true that my sinuses have been running with post nasal drip for the last month -- a symptom I haven't dealt with since the first year of ME/CFS.
Dr. W mentioned that a Mayo Clinic study showed 96% of cases of chronic sinusitis are caused by candida overgrowth. (That's a bit of an oversimplification of the study's results.) This immediately made sense to me based on my recent resurgence of candida due to antibiotic use and the return of sinusitis at around the same time.
Dr. W's solution was to prescribe Fluconozole again. I won't take the Fluconozole for at lest another month or two. As I've written about here recently, there are other more important treatments I need to try first - like the Interferon/Prozac experiment.
In terms of treatment plans, Dr. W is mostly out of ideas and I think I have plateaued under his care. (Pardon the use of "plateau" as a verb.) So I am looking for another local specialist who will (1) maintain the treatments from Dr. W that did work, and (2) introduce some new ideas to push me through the plateau.
In the meantime, I discussed with Dr. W that I have been taking antibiotics for almost two months to deal with ongoing prostatitis. We noted that my candida problem seems to have come back because of the antibiotics. My tongue is again coated with a white film - more so than in recent months.
At the same time, Dr. W noticed that I was sniffling. It's true that my sinuses have been running with post nasal drip for the last month -- a symptom I haven't dealt with since the first year of ME/CFS.
Dr. W mentioned that a Mayo Clinic study showed 96% of cases of chronic sinusitis are caused by candida overgrowth. (That's a bit of an oversimplification of the study's results.) This immediately made sense to me based on my recent resurgence of candida due to antibiotic use and the return of sinusitis at around the same time.
Dr. W's solution was to prescribe Fluconozole again. I won't take the Fluconozole for at lest another month or two. As I've written about here recently, there are other more important treatments I need to try first - like the Interferon/Prozac experiment.
Thursday, October 9, 2014
My Prostatitis - Probably Not Bacterial After All
I went back to my urologist about two weeks ago and told him that the prostatitis was still there after a month of various antibiotics, just as bad as ever. It tends to wax and wane, but mostly it just hangs around. We reviewed the fact that the Bactrim didn't work, the Levaquin didn't work, and the Omnicef didn't work. I suggested that it might not be a bacterial infection. He said he's not convinced of that. So as one final measure, he prescribed an additional month of Doxycycline.
Well, I'm about two weeks into that month-long course of Doxycycline, and the prostatitis is just as bad as ever. I'm now convinced that this is not a bacterial issue. Something tells me this has to be related to ME/CFS. When my body-wide inflammation gets worse, i.e. a crash, the prostatitis gets worse. I'm starting to accept that fact that this issue might not go away any time soon--that it might be another long-term symptom that I have to deal with as part of ME/CFS.
If that's what it is, I can accept that. The worst part of having a new symptom is the not knowing what you're dealing with. Once I get that figured out, I have something to research and focus treatment on. It's the not knowing that's the worst.
Well, I'm about two weeks into that month-long course of Doxycycline, and the prostatitis is just as bad as ever. I'm now convinced that this is not a bacterial issue. Something tells me this has to be related to ME/CFS. When my body-wide inflammation gets worse, i.e. a crash, the prostatitis gets worse. I'm starting to accept that fact that this issue might not go away any time soon--that it might be another long-term symptom that I have to deal with as part of ME/CFS.
If that's what it is, I can accept that. The worst part of having a new symptom is the not knowing what you're dealing with. Once I get that figured out, I have something to research and focus treatment on. It's the not knowing that's the worst.
Wednesday, September 17, 2014
The latest on my prostatitis
I wrote in my last post that the doctor switched me from Bactrim to Levaquin when the second course of Bactrim failed to bring the prostatitis under control. I was prescribed a 10 day course of Levaquin.
On about the 8th day of the Levaquin treatment, my symptoms were still mostly unchanged. I called the doctor again and he switched me to yet a third antibiotic: generic Omnicef (cefdinir). Again, he prescribed a 10 day course.
By about the second day of Omnicef treatment, I began to feel some relief. I'm about mid-day through the treatment now and I feel mostly normal "down there" -- maybe 95% of normal. But, at this stage, I can tell that some symptoms are still hanging around at a low level. I have the vague sense that if I stopped the antibiotics right now, the symptoms would come right back.
I am starting to realize based on my internet research and conversations with other patients that prostatitis can be very tricky and hard to kill. Sometimes it takes a month or two of antibiotics.
The good news is that, if you don't count the prostatitis, my overall health continues to be fairly good, as it was throughout the summer. My baseline health continues to rise at an almost imperceptibly slow rate. If it simply topped off right now and never got any better, I would probably count my blessings. My bigger concern would be relapse, so I am generally continuing with the pacing, supplements, and diet that (I think) got me here in the first place.
On about the 8th day of the Levaquin treatment, my symptoms were still mostly unchanged. I called the doctor again and he switched me to yet a third antibiotic: generic Omnicef (cefdinir). Again, he prescribed a 10 day course.
By about the second day of Omnicef treatment, I began to feel some relief. I'm about mid-day through the treatment now and I feel mostly normal "down there" -- maybe 95% of normal. But, at this stage, I can tell that some symptoms are still hanging around at a low level. I have the vague sense that if I stopped the antibiotics right now, the symptoms would come right back.
I am starting to realize based on my internet research and conversations with other patients that prostatitis can be very tricky and hard to kill. Sometimes it takes a month or two of antibiotics.
The good news is that, if you don't count the prostatitis, my overall health continues to be fairly good, as it was throughout the summer. My baseline health continues to rise at an almost imperceptibly slow rate. If it simply topped off right now and never got any better, I would probably count my blessings. My bigger concern would be relapse, so I am generally continuing with the pacing, supplements, and diet that (I think) got me here in the first place.
Wednesday, August 13, 2014
Prostatitis post, part 2
Every once in a while on this blog I write a post that, frankly, is more for my own benefit than anyone else's. I still post publicly just in case anyone else can be helped by it. This is one of those posts.
Whenever I face a new or worsening symptom, or a possible co-morbid condition, like prostatitis, I like to make a list of all the things I suspect may have contributed to the onset of the symptoms. That way, the next time the symptoms appear, I can refer back to the list and see if there are any similar circumstances. I'm looking for factors other than ME/CFS, because there was obviously an additional trigger or triggers. I've had ME/CFS for over three years but have only had two incidents of prostatitis during that time.
So here's the list of suspects.
1) In preparation for the camping trip, and during and after the camping trip, I did a lot of packing and unpacking of the car and moving boxes and semi-heavy items. What's interesting is, the two prior times that I got prostatitis (once in 2005 and once in 2013), was around the time I was moving residences and packing boxes. Is there something about packing, lifting and moving that is causing protatitis?
2) On a camping vacation last week, I drank both coffee (quite a bit) and alcohol (in small amounts), which I don't do regularly. In fact, I do them rarely. The Prostatitis Foundation website states that both coffee and alcohol can aggravate prostatitis.
3) Another suspect: My tri-weekly injections of bioidentical Testosterone as an ME/CFS treatment. Some internet sources say that testosterone levels, and in particular, DHT (testosterone's byproduct) are associated with prostatitis. On the other hand, many more internet search results state that the supposed DHT/prostatitis connection has been debunked. My urologist also told me back in 2013 that the testosterone injections were not related to prostatitis (and he is NOT the doctor who prescribed the injections, so I have no reason to distrust him.)
4) I did some very light yoga around the time the symptoms appeared, but I think the symptoms actually started a day or two beforehand. I can't be sure... This is one instance where my daily health chart failed me. Because the symptoms started so gradually, I neglected to note them when they first started, so I don't know the exact date.
5) Something unknown or unexpected like viral reactivation?
Whenever I face a new or worsening symptom, or a possible co-morbid condition, like prostatitis, I like to make a list of all the things I suspect may have contributed to the onset of the symptoms. That way, the next time the symptoms appear, I can refer back to the list and see if there are any similar circumstances. I'm looking for factors other than ME/CFS, because there was obviously an additional trigger or triggers. I've had ME/CFS for over three years but have only had two incidents of prostatitis during that time.
So here's the list of suspects.
1) In preparation for the camping trip, and during and after the camping trip, I did a lot of packing and unpacking of the car and moving boxes and semi-heavy items. What's interesting is, the two prior times that I got prostatitis (once in 2005 and once in 2013), was around the time I was moving residences and packing boxes. Is there something about packing, lifting and moving that is causing protatitis?
2) On a camping vacation last week, I drank both coffee (quite a bit) and alcohol (in small amounts), which I don't do regularly. In fact, I do them rarely. The Prostatitis Foundation website states that both coffee and alcohol can aggravate prostatitis.
3) Another suspect: My tri-weekly injections of bioidentical Testosterone as an ME/CFS treatment. Some internet sources say that testosterone levels, and in particular, DHT (testosterone's byproduct) are associated with prostatitis. On the other hand, many more internet search results state that the supposed DHT/prostatitis connection has been debunked. My urologist also told me back in 2013 that the testosterone injections were not related to prostatitis (and he is NOT the doctor who prescribed the injections, so I have no reason to distrust him.)
4) I did some very light yoga around the time the symptoms appeared, but I think the symptoms actually started a day or two beforehand. I can't be sure... This is one instance where my daily health chart failed me. Because the symptoms started so gradually, I neglected to note them when they first started, so I don't know the exact date.
5) Something unknown or unexpected like viral reactivation?
Sunday, August 10, 2014
The Possible Connection Between Prostatitis and ME/CFS
The prostatitis that I wrote about in November and December seems to be back. This is not a surprise. Prostatitis is inflammation in the prostate that can sometimes be caused by a bacterial infection, but is more often caused by general inflammation of the prostate.
Just like with ME/CFS in general, I'm going to start trying various treatments (both self-help and through doctors) until I find something that works best for me. But I know now not to rely solely on my doctors. I know to take responsibility for my own care and to research and understand the condition as well as I can... and most importantly, to be a partner with my doctors, not just a blind follower. I'm optimistic that, while I may not find a cure, I'll find ways to gain at least some measure of control over the symptoms. In the end, that's all I can ask for.
End Note: For those thinking that I may have prostate cancer, I have had a couple of digital rectal exams [DRE's] in the last couple of years, and all were unremarkable. But, from what I've read, one must always rule out the possibility of prostate cancer when he has symptoms of prostatitis.
My November-December episode of prostatitis wasn't the first and the urologist told me it probably wouldn't be the last. He said that after one contracts prostatitis, it tends to slowly become a chronic condition. It may be a lifelong companion.
The question in my mind has been: is this related to ME/CFS, or just another sign of getting older? I believe it is probably related for several reasons. First, I never had chronic prostatitis before ME/CFS. Before, I had one bad episode of a urinary tract infection, and would occasionally get some mild symptoms similar to what I experience now--but nothing as severe as this new pain.
I now believe those early, mild symptoms were warning signs. I believe they were signs that the underlying cause of my ME/CFS (a weak immune system) had been building toward a tipping point for some time before I came down with ME/CFS. (More on why I believe that in a future post)
As I researched prostatitis, I began to see many familiar themes from the ME/CFS community. Prostatitis is normally a chronic condition of unknown origin. It tends to baffle doctors. Doctors (even urologists) often become frustrated with chronic prostatitis patients because they don't know how to solve the patients' problems. (Prostatitis Foundation). Sound familiar?
Prostatitis is essentially a disease of inflammation. While a small percentage of acute prostatitis cases are caused by bacterial infection, most are caused by inflammation of unknown origin. (Prostatitis Foundation).
Here's a list of the possible causes of prostatitis, from the Prostatitis Foundation website. I've highlighted the areas of cross-over from ME/CFS:
- Bacterial infection,
- Auto-immune response or disordered immune response,
- Neuromuscular, tension or physical injury problem
- Additional possible causes:
- a uric acid disorder,
- prostate stones,
- a urethral stricture,
- a rare tumor,
- prostate cancer,
- benign prostatic hyperplasia (BPH, non-cancerous growth of the prostate),
- a food allergy,
- a yeast infestation,
- a specific yeast problem from the Genus Candida,
- or a virus. (Prostatitis Foundation)
And then there's this quote from the Prostatitis Foundation website:
There's growing interest in the idea that prostatitis may be caused by immune disorders or allergies, in which case treating the inflammation is the way to go. ... There are research trials underway with the drug Elmiron, which addresses auto-immunity and mast cell responses. And antibiotics themselves have anti-inflammatory benefits. (http://prostatitis.org/methods.html)Then there is the Candida connection. It seems both ME/CFS and prostatitis often go hand-in-hand with Candida overgrowth, which points back to immune dysfunction.
A significant number of men with chronic prostatitis have found relief ranging from a cure to welcome diminution of symptom severity after following an anti-candida regimen. ....
It is uncertain whether a yeast overgrowth in the gut lowers general body resistance by attacking the immune system, thereby allowing dormant bacteria in the prostate to re-activate (proven science: [Candida] toxins disarm elements of the immune system), or whether the effects on the immune system result in non-bacterial inflammation to the prostate tissue (and often the sinuses as well - another poorly perfused part of the body), or indeed whether the organism actually infects the prostate tissue directly....
Here follows a shortened list of the associated symptoms which typically accompany a CA-induced prostatitis ... painful lymph nodes ... unexplained fatigue ... always catching colds and flus ... mental confusion, fogginess ... cold hands and feet ... (http://prostatitis.org/fungus.html)All this gives rise to the possibility in my mind that prostatitis is yet another related or "co-morbid condition" with ME/CFS. The good news is that, before ME/CFS, I would have probably visited a couple of doctors, who would probably shrug and fail to offer much help. At that point I would have simply accepted that this condition is just a new fact of life. Now, I'm much more motivated and have the tools and general understanding of the inflammatory conditions in my body to actually do something about it.
Just like with ME/CFS in general, I'm going to start trying various treatments (both self-help and through doctors) until I find something that works best for me. But I know now not to rely solely on my doctors. I know to take responsibility for my own care and to research and understand the condition as well as I can... and most importantly, to be a partner with my doctors, not just a blind follower. I'm optimistic that, while I may not find a cure, I'll find ways to gain at least some measure of control over the symptoms. In the end, that's all I can ask for.
End Note: For those thinking that I may have prostate cancer, I have had a couple of digital rectal exams [DRE's] in the last couple of years, and all were unremarkable. But, from what I've read, one must always rule out the possibility of prostate cancer when he has symptoms of prostatitis.
Tuesday, December 3, 2013
A quick follow-up to my groin pain post
I've now been taking Cipro since last Wednesday night (12 doses out of a total of 20) and I still have the pain. Oddly, there was a reprieve on Sunday, when I felt almost no pain all day, and then it came right back on Monday. I have been very good about taking Cipro apart from other supplements and food containing minerals, to ensure absorption. The D-Mannose has not helped either.
I now believe that the issue probably is not bacterial.
I have a return appointment with the urologist on Monday, at which point I will explore other possibilities with him. I posted about this issue on an ME/CFS forum recently and got a surprising number of good suggestions and possibilities. One possibility I wonder about is if it could be candida in the UT, due to deficient immunity. I may try a few days of Diflucan and see if that helps.
Thanks to everyone who has given me feedback and advice on this since my last post. We truly have a knowledgeable and compassionate community that (for the most part) works together to help one another.
P.S. I am aware of the significant risks that Cipro poses, and believe me, I did not take them lightly. I accepted the risk and unfortunately it did not pay off. I thank those who raised the issue nonetheless.
I now believe that the issue probably is not bacterial.
I have a return appointment with the urologist on Monday, at which point I will explore other possibilities with him. I posted about this issue on an ME/CFS forum recently and got a surprising number of good suggestions and possibilities. One possibility I wonder about is if it could be candida in the UT, due to deficient immunity. I may try a few days of Diflucan and see if that helps.
Thanks to everyone who has given me feedback and advice on this since my last post. We truly have a knowledgeable and compassionate community that (for the most part) works together to help one another.
P.S. I am aware of the significant risks that Cipro poses, and believe me, I did not take them lightly. I accepted the risk and unfortunately it did not pay off. I thank those who raised the issue nonetheless.
Saturday, July 20, 2013
My shockingly poor circulation
In ME circles, keep seeing articles and research about poor blood circulation. I wrote about one recently. For me personally, this is a key issue, but I can't figure out how it ties into my other symptoms. I just know that it does tie in...somehow.
It all starts with the arms and hands for me. For others, it seems to start with the legs and feet. This is a problem that has become much more prominent for me in the last 6 months.
What happens? I can't have my arms or hands anywhere above the level of my heart for more than a few seconds without them becoming tingly and numb. For example, do you ever lean back in a chair, interlace your fingers behind your head in order to relax? When I do this, my arms and hands immediately being to tingle and fall asleep.
And my arms don't even need to be that high for this to happen. For instance, when I do light yoga, even holding my arms out to the side at about chest level (the same level as my heart)--as in Warrior 2 pose--I experience the same problem. When you think about it, that is insanely poor circulation. How can my heart not even mange to pump blood horizontally to the hands that are two feet away?
Some people believe that the brain fog we experience in ME/CFS is less from inflammation as it is from poor blood flow to the head. I'm not sure I agree with that, but I do think that inflammation is somehow also involved in these poor circulation issues. I know this because when I'm crashed and feeling overall inflammation, my hand numbness gets even worse.
I haven't spoken with many others who specifically experience the poor circulation in the arms and hands, but I'd like to hear from others how & where you have poor circulation.
I'll also leave you with a few links to other articles & studies about poor circulation in ME/CFS, besides the one linked above:
Incidentally, the one treatment that I have found to help with poor blood flow is D-Ribose. When I forget to take D-Ribose or am late with a dose, the problem is worse.
It all starts with the arms and hands for me. For others, it seems to start with the legs and feet. This is a problem that has become much more prominent for me in the last 6 months.
What happens? I can't have my arms or hands anywhere above the level of my heart for more than a few seconds without them becoming tingly and numb. For example, do you ever lean back in a chair, interlace your fingers behind your head in order to relax? When I do this, my arms and hands immediately being to tingle and fall asleep.
And my arms don't even need to be that high for this to happen. For instance, when I do light yoga, even holding my arms out to the side at about chest level (the same level as my heart)--as in Warrior 2 pose--I experience the same problem. When you think about it, that is insanely poor circulation. How can my heart not even mange to pump blood horizontally to the hands that are two feet away?
Some people believe that the brain fog we experience in ME/CFS is less from inflammation as it is from poor blood flow to the head. I'm not sure I agree with that, but I do think that inflammation is somehow also involved in these poor circulation issues. I know this because when I'm crashed and feeling overall inflammation, my hand numbness gets even worse.
I haven't spoken with many others who specifically experience the poor circulation in the arms and hands, but I'd like to hear from others how & where you have poor circulation.
I'll also leave you with a few links to other articles & studies about poor circulation in ME/CFS, besides the one linked above:
http://www.cfids-cab.org/cfs-inform/Brainscans/yoshiuchi.etal06.pdfThen there's the question of how poor blood circulation relates to low blood volume, (which is more the issue with POTS, OI, and sometimes tachycardia) if at all. They are often treated as separate issues in the medical literature, but then again, it's hard to see how low blood volume wouldn't contribute to poor circulation.
http://www.cfids-cab.org/MESA/cardiac.html
http://www.webmd.com/chronic-fatigue-syndrome/news/20030414/tricky-heart-may-cause-chronic-fatigue
Incidentally, the one treatment that I have found to help with poor blood flow is D-Ribose. When I forget to take D-Ribose or am late with a dose, the problem is worse.
Wednesday, February 6, 2013
The absolute worst symptom
I've spoken with a few PWME's about their scariest symptoms, and the answers vary widely.
For me, without a doubt, it's brain fog. I rarely get serious brain fog, and when I do, I usually know the reason. Often times it's when I've increased vitamin B12 intake without increasing potassium. The last time, it was when I tried a Pregnenolone/DHEA supplement (100mg/50mg). So when it does happen to me, it seems to be more of a side effect of treatments rather than a direct ME/CFS symptom. But I wonder, if I had taken those same supplements before getting ME/CFS, would I have had the same brain fog? Almost certainly not.
I dread brain fog because it's the one symptom that profoundly interferes with my mood. I could be having terrible flu-like symptoms, or crushing shortness of breath, and still manage to be in a good mood...more or less. But brain fog is different. When I have it, I'm just not myself. The simplest mental tasks become challenging. I struggle to find the right words to form even basic sentences. That leads to more frustration.
I've always suspected that I have naturally high levels of seratonin or dopamine, or whatever it is that makes us happy. I've been a traditionally happy-go-lucky person, for the most part. And on days when I'm not feeling particularly happy, I can often consciously redirect my thoughts to more positive territory, turning a bad day good. But on those rare occasions when I'm hit with brain fog, none of that seems to work. I've tried to consciously control my mood on brain foggy days and find that it is simply impossible.
Nothing in my pre-ME life prepared me for brain fog. I've experienced flu-like symptoms before. I can even relate shortness of breath and other symptoms to various pre-ME experiences. Brain fog, on the other hand, is completely foreign. I wouldn't know how to begin to explain it to someone who hasn't experienced it.
When other patients tell me they have brain fog on a daily basis, my heart goes out to them. And I hope they're not talking about the severity of brain fog that I get. I can't imagine living with that every day.
(By the way, if I had to choose a second-worst symptom, it would be the nerve problems I occasionally experience in my hands and feet. I lose coordination in my extremities for a day or two at a time, and I have no idea why).
I'd be interested to know what symptoms rank as the worst for others...
Has anyone found any success controlling brain fog? For me, it seems to be about getting my electrolyte and mineral levels balanced, but this is just a working theory.
Tuesday, September 25, 2012
Are my strange neuro symptoms tied to diet?
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?
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?
Monday, January 23, 2012
Measuring Improvement
When I've having a setback, it's easy to forget the progress I've made. And so, at times like that, it becomes important to resurrect memories of the earlier phases of my battle with ME--to remember how far I've come. In this post, I'm creating a list of dead or dying symptoms so that I can refer back to them when necessary to remember that I am, in fact, improving...albeit slowly.
As I think back over the last six and a half months, it seems there were two previous phases of my illness. During the first two and a half months, the ME was in its acute phase, and I had a number of symptoms that I haven't experienced since. The next two and a half months saw some improvement, but not as much as after I began my latest supplement regimen on about 12/5/11. In the list below, I note which symptoms belong to which phase, with the acute phase being marked by (*), and the second phase by (†).
Long lost symptoms/experiences:
1. Kidney-area pain so severe that I had to avoid sleeping on a certain side. I also had to drive with my back separated from the driver's seat because the seat inflamed the pain.*
2. Fatigue so severe that walking 150 yards to the cafeteria at Hoag Hospital seemed questionable.*
3. Nausia and lack of appetite. I used to keep a column on my health chart for nausea. After changing to a low carb diet, I no longer even have to fill in that column because the rating is always "0." *†
4. The distinct feeling, on two occasions that there was "poison in my veins." *
5. Bloated stomach on two specific occasions during the acute phase, accompanied by constant unrest and gurgling in the intestines*
6. Muscle twitches.*†
7. A feeling of tingling or numbness in my extremities, especially the fingers when doing fine motor skills like typing. Also, numbness in the legs while walking.*†
8. Extreme light-headedness after standing. (I still experience this symptom more than before ME, but much less frequently and severely as in phases 1 and 2.)*†
9. Sore throats. I used to suffer at least one sore throat a week. After beginning the ImmunoStim supplement, I no longer get them.*†
10. White spot on left tonsil. The sore throats were often accompanied by a white spot on my left tonsil, about a 1/2 centimeter in diameter. While I still occasionally get this spot, it is smaller and not accompanied by a sore throat. *†
11. Coloring. My co-workers used to comment that I had lost all coloring in my face on days when I was feeling particularly bad. Now, my sickness no longer shows outwardly (other than the lost weight).*
12. Chills. I used to get the chills occasionally; sometimes so bad that no matter how many layers I wore, I would still shiver.*
13. Unusually cold hands and feet. This started with my illness in July and improved when I started with the thyroid supplementation. While I still experience it sometimes, it is not nearly as often.*†
14. A few episodes of green bowel movements. WTH?*
15. One month of pale, loose, floating stools.*
16. Two episodes of extreme pain in my groin area, both lasting about 24 hours. Both were so severe that I had to walk with my legs spread farther apart. (Talk about embarassing!)*
17. Low blood pressure. It used to be about 99/68. More recently, it has been about 120/80.*†
18. Chest pains. I used to get these bizarre, stabbing chest pains that would come out of nowhere and stay around for about 24 hours.*
19. Swollen neck/swollen lymph nodes. Also stopped after I began the ImmunoStim.*†
20. Post nasal drip. For about a 2 months in the second phase, I had constant post-nasal drip. This stopped when I cut down on dairy and started treating Candida more aggressively.†
21. Cough. I had a light cough throughout the first phase.*
22. Weak urine stream. During phase 1, my urine would, quite literally, drip out at times. It has since normalized.*
23. I had days where I felt too weak to stop for gas on the way home from work. On other days, I felt too weak to get in my car to grab lunch. A single trip to the supermarket, or to a restaurant with my wife was once a taxing event. *†
24. Headaches lasting about an hour at a time.*†
25. Insomnia. Prior to December, I would get an episode of insomnia about once or twice a week. On these nights, I would find myself either unable to sleep or in a state of very light "cat-napping" all night long. These episodes would absolutely ruin me the following day. They improved about the time I began supplementing magnesium, and then greatly improved when I started taking tiny amounts of melatonin each night.*†
26. Swollen lymph node under the right arm pit.*
So, the good news is that I have basically cut my list of symptoms from a maximum of 16 at one time to 3: Fatigue, kidney-area pain, and shortness of breath. These 3 symptoms I call "my big 3" because they have always been at the top of my list in terms of severity and frequency, and now they are the only three. This makes it much easier to talk to doctors without them seeming overwhelmed or skeptical.
The bad news is that I haven't made much headway against the big 3. For a time it appeared that the vitamin D3 was helping with shortness of breath, but recently, it has come back as strong as ever, even while at complete rest.
With regard to the fatigue, I will say that my crashes are shorter in duration and severity. Whereas I used to crash for 4 or 5 days straight, my crashes now only seem to last a day or two, and I'm not quite as incapacitated as before. On the other hand, there seems to be a sort of ceiling to my recovery because I can never pass the 90% barrier, no matter what I do. And I rarely get close to that.
Now, let's see what we can do to destroy the big 3! Can you sense their fear?
As I think back over the last six and a half months, it seems there were two previous phases of my illness. During the first two and a half months, the ME was in its acute phase, and I had a number of symptoms that I haven't experienced since. The next two and a half months saw some improvement, but not as much as after I began my latest supplement regimen on about 12/5/11. In the list below, I note which symptoms belong to which phase, with the acute phase being marked by (*), and the second phase by (†).
Long lost symptoms/experiences:
1. Kidney-area pain so severe that I had to avoid sleeping on a certain side. I also had to drive with my back separated from the driver's seat because the seat inflamed the pain.*
2. Fatigue so severe that walking 150 yards to the cafeteria at Hoag Hospital seemed questionable.*
3. Nausia and lack of appetite. I used to keep a column on my health chart for nausea. After changing to a low carb diet, I no longer even have to fill in that column because the rating is always "0." *†
4. The distinct feeling, on two occasions that there was "poison in my veins." *
5. Bloated stomach on two specific occasions during the acute phase, accompanied by constant unrest and gurgling in the intestines*
6. Muscle twitches.*†
7. A feeling of tingling or numbness in my extremities, especially the fingers when doing fine motor skills like typing. Also, numbness in the legs while walking.*†
8. Extreme light-headedness after standing. (I still experience this symptom more than before ME, but much less frequently and severely as in phases 1 and 2.)*†
9. Sore throats. I used to suffer at least one sore throat a week. After beginning the ImmunoStim supplement, I no longer get them.*†
10. White spot on left tonsil. The sore throats were often accompanied by a white spot on my left tonsil, about a 1/2 centimeter in diameter. While I still occasionally get this spot, it is smaller and not accompanied by a sore throat. *†
11. Coloring. My co-workers used to comment that I had lost all coloring in my face on days when I was feeling particularly bad. Now, my sickness no longer shows outwardly (other than the lost weight).*
12. Chills. I used to get the chills occasionally; sometimes so bad that no matter how many layers I wore, I would still shiver.*
13. Unusually cold hands and feet. This started with my illness in July and improved when I started with the thyroid supplementation. While I still experience it sometimes, it is not nearly as often.*†
14. A few episodes of green bowel movements. WTH?*
15. One month of pale, loose, floating stools.*
16. Two episodes of extreme pain in my groin area, both lasting about 24 hours. Both were so severe that I had to walk with my legs spread farther apart. (Talk about embarassing!)*
17. Low blood pressure. It used to be about 99/68. More recently, it has been about 120/80.*†
18. Chest pains. I used to get these bizarre, stabbing chest pains that would come out of nowhere and stay around for about 24 hours.*
19. Swollen neck/swollen lymph nodes. Also stopped after I began the ImmunoStim.*†
20. Post nasal drip. For about a 2 months in the second phase, I had constant post-nasal drip. This stopped when I cut down on dairy and started treating Candida more aggressively.†
21. Cough. I had a light cough throughout the first phase.*
22. Weak urine stream. During phase 1, my urine would, quite literally, drip out at times. It has since normalized.*
23. I had days where I felt too weak to stop for gas on the way home from work. On other days, I felt too weak to get in my car to grab lunch. A single trip to the supermarket, or to a restaurant with my wife was once a taxing event. *†
24. Headaches lasting about an hour at a time.*†
25. Insomnia. Prior to December, I would get an episode of insomnia about once or twice a week. On these nights, I would find myself either unable to sleep or in a state of very light "cat-napping" all night long. These episodes would absolutely ruin me the following day. They improved about the time I began supplementing magnesium, and then greatly improved when I started taking tiny amounts of melatonin each night.*†
26. Swollen lymph node under the right arm pit.*
So, the good news is that I have basically cut my list of symptoms from a maximum of 16 at one time to 3: Fatigue, kidney-area pain, and shortness of breath. These 3 symptoms I call "my big 3" because they have always been at the top of my list in terms of severity and frequency, and now they are the only three. This makes it much easier to talk to doctors without them seeming overwhelmed or skeptical.
The bad news is that I haven't made much headway against the big 3. For a time it appeared that the vitamin D3 was helping with shortness of breath, but recently, it has come back as strong as ever, even while at complete rest.
With regard to the fatigue, I will say that my crashes are shorter in duration and severity. Whereas I used to crash for 4 or 5 days straight, my crashes now only seem to last a day or two, and I'm not quite as incapacitated as before. On the other hand, there seems to be a sort of ceiling to my recovery because I can never pass the 90% barrier, no matter what I do. And I rarely get close to that.
Now, let's see what we can do to destroy the big 3! Can you sense their fear?
Thursday, December 15, 2011
My Symptoms
They say that, other than fatigue, every PWC experiences a different set of symptoms. But from what I've read on CFS message boards, most of us share the majority of our symptoms. We just list them in different orders. Everyone lists fatigue first. After that, some list IBS, others sore throats, others insomnia, and on down the list.
Here's my list, cut and pasted directly from the list I gave to my doctors:
100% of the time
1. Fatigue. Amount of sleep has no effect.
60-80% of the time
2. Kidney area swelling/discomfort. Bilateral
3. Shortness of breath. Both at rest and walking.
4. Sniffles. Post nasal drip.
5. Sore throat.
6. Low blood pressure. Dizziness on standing.
7. Loss of appetite. (Lost 15 pounds in first month.)
Occasionally
8. Insomnia – once or twice a week.
9. IBS-type symptoms
10. Swollen glands. Neck and right armpit.
11. Loss of concentration. Forgetfulness.
12. Tenderness and swelling in the abdomen.
Rarely
13. Headaches
14. Groin pain
15. Muscle twitches
Here's my list, cut and pasted directly from the list I gave to my doctors:
100% of the time
1. Fatigue. Amount of sleep has no effect.
60-80% of the time
2. Kidney area swelling/discomfort. Bilateral
3. Shortness of breath. Both at rest and walking.
4. Sniffles. Post nasal drip.
5. Sore throat.
6. Low blood pressure. Dizziness on standing.
7. Loss of appetite. (Lost 15 pounds in first month.)
Occasionally
8. Insomnia – once or twice a week.
9. IBS-type symptoms
10. Swollen glands. Neck and right armpit.
11. Loss of concentration. Forgetfulness.
12. Tenderness and swelling in the abdomen.
Rarely
13. Headaches
14. Groin pain
15. Muscle twitches
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