I've figured it out. Only took me what? Four months? I've finally been well enough to do a little bit of complicated reading. The original post is here.
The short story is that the brain has glutamate and GABA. It needs both to function well. However, too much glutamate can be a very bad thing. It causes brain fog and can lead to brain cell death. [1] It is speculated that CFSers have too much glutamate in the brain. [2] Hence the brain fog. Turns out Cipro binds with the GABA receptors in the brain causing the brain to create more GABA. [3, 1] GABA is what gets rid of extra glutamate. [1] So when I had several IVs of Cipro, I'm guessing that my brain started making more GABA which got rid of the extra glutamate and my CFS got better. Woot!! The only bad part is that it made me go lame. (However the lameness probably came from the Levofloxacin not the Cipro [3]) Now to figure out how I can get more GABA into my system by a safer means so that I won't risk going lame in the process....
Along comes Terri Wahls (I'm beginning to love this woman). In her book Minding Your Mitochondria, she states that GABA can't cross the blood brain barrier so it can't be taken in through diet. Instead you have to supplement with the building blocks needed for the brain to produce it on its own, cysteine, taurine and methionine. Basically supplementing with NAC and taurine might fix this. [1] I already had NAC in my pill stash and I purchased taurine today. So the great supplement experiment commences...
I decided since the supplements I'm currently taking are best guesses by a random collection of practitioners, I'm just going to revamp my whole pill schedule based on Dr. Wahls' program. She recommends getting most of the stuff from food but I'm still not eating enough of the right stuff to get all of my nutrients from my diet. I'm missing vegetables, greens, fish, and offal. Stuff I'm lacking is due to the problem of prep work in order to eat it. It is also complicated by the fact that I get severe heartburn if I follow her 3 cups of cruciferous veg a day recommendation. I just can't eat the sheer number of vegetables she wants and stay off heartburn meds. So I'm supplementing until I can further refine my diet.
Here is the master list (I'm not listing dosages on purpose go to Dr. Wahls book for the details):
Thiamine
Riboflavin
Niacinamide
Methyl B12
D3 (for the winter months)
Folate
CoQ10
Iodine
Magnesium
Taurine
Resveratrol
N acetylcysteine (NAC)
L Carnitine
Alpha Lipoic Acid (ALA)
Ester C (not on Wahls' list but highly recommended by several of my docs)
Calcium (also not on Wahls' list but I find it helps to take it with Magnesium for muscle cramps)
S. Boulardii (not on Wahls' list but I feel better when taking it)
Biffida (not on Wahls' list but I tested deficient earlier this year)
Stuff I take in food form:
fermented cod liver oil
vitamin butter
probiotics in yogurt, kefir, sauerkraut and fermented beets
selenium as Brazil nuts (I just realized that my mysterious nail breakages have been from eating too many of them. I have to cut back to one nut no more than three times a week.)
I was already taking a lot of these supplements. The revamp has added many more pills though. I should take five sets of pills since some have to be taken between meals. Ugh. I'm not sure how compliant I'm going to be. I hate taking pills so much I can just see me skipping doses.
The one really weird thing I noticed during the revamp was that somehow I dropped the ALA from my regimen. I don't know when or why or how this happened. I've been on ALA from early on in this illness. Maybe I simply ran out of pills and forgot to order more. I'm really stumped on this one. Anyway, it'll be good to have it back in rotation. And hopefully I'll be generating more GABA soon.
For further reading:
[1] Dr. Terri Wahls, Minding Your Mitochondria 2nd edition
[2] http://www.cortjohnson.org/blog/2013/09/26/gene-expression-study-suggests-me-cfs-post-cancer-fatigue-share-common-pathway/
[3] http://aac.asm.org/content/33/10/1704.full.pdf+html
Tuesday, November 19, 2013
Wednesday, November 13, 2013
Happy Car Sad Car
Happy car: sad car.
Well car: sick car.
I figured out what has been bugging me about buying the new car and giving up my old one. It is another loss to CFS/ME. My old car represented freedom. I traveled to work. I drove to Toastmasters meetings and contests and conferences all over the state. I drove to garden club meetings and garden parties. I loaded up gardening club members and we filled the trunk with plants and soil and rocks for our gardens. I drove to college reunions and to the airport. I drove to Lake Placid several times by myself to spend a week figure skating with my Mom. We went on family vacations all over New England in it. I drove to figure skating practice, ice shows and tests. I drove to the gym and to restaurants. It was my well car. My gateway to freedom to roam this planet as I wished. I have lots of happy memories in that car. I taught my son to drive in that car.
My new car is gorgeous. However, I keep crying when I think of leaving my old car at the dealership never to be seen again. My new car is my sick car. The one that I had to fit my wheelchair in instead of my gardening supplies and figure skates. The new car had to fit all three drivers so that I can have my family chauffeur me around because I can't drive myself most days. The new car had to have a soft ride so that it didn't aggravate my neuro symptoms and leave me unable to walk or talk after a road trip. The new car had to have easy steering so I can turn the wheel with little effort so that on the odd occasion I do drive it isn't physically tiring for me. My new car is my sick car. The one I was forced to buy because of the circumstances forced upon me by CFS/ME. My life is becoming circumscribed by my illness and I don't like no matter how pretty my new car is.
So while I like my new car and admire its engineering, I also hate it. Nah... Hate is too strong a word; maybe dislike is better. I dislike my new car. It is shiny and new and pretty and smooth and big but I miss my old car even though it was broken. I miss it even though the power steering would cut out mid turn and a string of obscenity would fly out of my son. I miss it even though the passenger seat is stained from spilled milk shakes and coffees. I miss it even though the rear seats are stained from the wet butts of my kid's BB rifle team after playing in the rain. I miss it even though it is scratched and pitted and dented. However, I know where each of those scratches and dents came from: my son scraping ice off my hood with a broom; me trying to squeeze down a too narrow road and having a bush scrape the length of my car; the little dent in the bumper from the lady rear ending me when I was sitting at a stop light on my way to work and she was on her cell phone. These are the memories of freedom. Memories of my life before CFS/ME. My well car. My happy car.
Eventually my new car might become my happy car. We'll go on family trips and spill crap in the seats and dent it and ding it. New memories will be made. At this juncture I'm dubious. I don't know which way things will go. Happy or sad. So right now; right this minute; it is my sad car: my sick car. Hopefully that will change.
Well car: sick car.
I figured out what has been bugging me about buying the new car and giving up my old one. It is another loss to CFS/ME. My old car represented freedom. I traveled to work. I drove to Toastmasters meetings and contests and conferences all over the state. I drove to garden club meetings and garden parties. I loaded up gardening club members and we filled the trunk with plants and soil and rocks for our gardens. I drove to college reunions and to the airport. I drove to Lake Placid several times by myself to spend a week figure skating with my Mom. We went on family vacations all over New England in it. I drove to figure skating practice, ice shows and tests. I drove to the gym and to restaurants. It was my well car. My gateway to freedom to roam this planet as I wished. I have lots of happy memories in that car. I taught my son to drive in that car.
My new car is gorgeous. However, I keep crying when I think of leaving my old car at the dealership never to be seen again. My new car is my sick car. The one that I had to fit my wheelchair in instead of my gardening supplies and figure skates. The new car had to fit all three drivers so that I can have my family chauffeur me around because I can't drive myself most days. The new car had to have a soft ride so that it didn't aggravate my neuro symptoms and leave me unable to walk or talk after a road trip. The new car had to have easy steering so I can turn the wheel with little effort so that on the odd occasion I do drive it isn't physically tiring for me. My new car is my sick car. The one I was forced to buy because of the circumstances forced upon me by CFS/ME. My life is becoming circumscribed by my illness and I don't like no matter how pretty my new car is.
So while I like my new car and admire its engineering, I also hate it. Nah... Hate is too strong a word; maybe dislike is better. I dislike my new car. It is shiny and new and pretty and smooth and big but I miss my old car even though it was broken. I miss it even though the power steering would cut out mid turn and a string of obscenity would fly out of my son. I miss it even though the passenger seat is stained from spilled milk shakes and coffees. I miss it even though the rear seats are stained from the wet butts of my kid's BB rifle team after playing in the rain. I miss it even though it is scratched and pitted and dented. However, I know where each of those scratches and dents came from: my son scraping ice off my hood with a broom; me trying to squeeze down a too narrow road and having a bush scrape the length of my car; the little dent in the bumper from the lady rear ending me when I was sitting at a stop light on my way to work and she was on her cell phone. These are the memories of freedom. Memories of my life before CFS/ME. My well car. My happy car.
Eventually my new car might become my happy car. We'll go on family trips and spill crap in the seats and dent it and ding it. New memories will be made. At this juncture I'm dubious. I don't know which way things will go. Happy or sad. So right now; right this minute; it is my sad car: my sick car. Hopefully that will change.
Tuesday, November 12, 2013
The Car
It is done! I've bought a new car. It is a dove gray Mercedes ML350. Everyone fits in it. The wheelchair fits in it. It is kind of difficult for me to climb into but hey I usually don't travel when I'm really messed up. We've got a month to decide if it won't work.
I must say I do love buying cars from the high end dealerships. I write a check for an obscene amount of money and they take care of absolutely everything; title, insurance, RMV, plates, inspection. I just show up and drive away. Woot!
So here is a stock photo of the same type of car I just bought. It even has enough room for when I get a full sized wheelchair. Yay!
I must say I do love buying cars from the high end dealerships. I write a check for an obscene amount of money and they take care of absolutely everything; title, insurance, RMV, plates, inspection. I just show up and drive away. Woot!
So here is a stock photo of the same type of car I just bought. It even has enough room for when I get a full sized wheelchair. Yay!
Monday, November 4, 2013
Car Shopping
My car is falling apart. It is literally unsafe to drive at this point. The steering has a serious issue in that the power steering randomly stops working usually when you are taking a left turn. Very dangerous. My son has nearly gotten into two head-on collisions because the steering failed on him mid turn. Now the exhaust has sprung a leak and it sounds like a ricer car (Japanese race car). So I've been trying to car shop this past month.
Riding in a car is horrible for me. It makes me deteriorate into whimpering, sleepy, bobblehead doll that can't speak, walk or make decisions. So finding the right car is imperative. I've found that I need something that is quiet and has a very soft comfortable ride. This allows me to travel further before my symptoms deteriorate. Due to my fibro and osteoarthritis in my back, I need something that is very easy to steer. And to further complicate things, my wheelchair needs to fit in the trunk along with groceries. My husband is 6'8" and I'm 5'2" which makes finding a car that we both fit in almost impossible. Kid is the main driver with hubs secondary and I'm a very distant third. So the basic starting criteria are:
This past month I've been attempting to go car shopping. For me this is a super human feat. The trips takes hours and I'm usually a complete wreck by the end. I've tried to do some of the research on line but I can't retain information about the cars or remember which ones I've looked at or what features I like. Going out to physically car shop, I can only drive around parking lots and don't trust myself on roads. I also can't remember which cars I've tried out and which ones I've already rejected. This is a very difficult project for me but I desperately need a new car. Every time the power steering fails on my son he threatens to drag me out car shopping again.
Today we were supposed to go back and see a Mercedes wagon that it took me overnight to decide that I liked it. Things weren't going well. I already had a meltdown and we hadn't even left the house yet. I was scared that hubs would get mad. He had that face on. He kept saying he was fine. We had discussed finances, how much we could afford, how much the down-payment needed to be, how much the monthly load payments would be and even what the insurance payments would be. I thought we were all set. Now one thing to note: hubs own five vehicles that are lucky to see the light of day once or twice a month and his daily driver is a company van. I'm driving around in a dangerous car that shouldn't even be on the road.
On the onramp to the highway (we didn't even get to the dealership yet), his mad switch flipped on "The car is broken! My wife is broken! The bathtub is broken! I'm being forced to spend thousands of dollars against my will! Of course I'm angry!" Me, "It isn't like we didn't see this coming." (my car has had a this steering problem for over four years but it has only recently become dangerous) "We've been talking about buying a new car for over a year now." I shut up so things wouldn't get worse.
We got to the strip of road where all the auto dealers were. I asked if he wanted to look around the lots we missed yesterday. "Sure." I recognize that tone. He's going to pop soon. This isn't over yet. So we go cruising around the various lots, Lexus, Toyota, Chevy, Porsche (hey I can dream) and then we get to the Jeep lot. As we are driving around, I notice a Jeep which I don't recognize the model name and make a comment, "Hey, I've never heard of that model." And it starts, "What planet do you live on???? Don't you remember that one that lived in our driveway for a month??? I was fixing it for a friend of mine and you couldn't get your crap together to go for a ride in it!!!" I fall silent. "What happened to that smart woman I married??? Huh??? You can't remember a damn thing!!! I have to keep track of everything for you!!! What happened to you!?!?!" The words still hurt even as I type them hours later. Needless to say I just broke out in tears. He had to pull into the McD's lot to try and talk with me but it was too late. I was a mess. "I'm not stupid. I'm sick. I'm REALLY sick. It affects my brain." He took me home where I devolved into an incoherent CFS pile of bobblehead jello. I was so upset that my CFS symptoms just escalated to the worst I've been in almost a year. Shakes. Head bobbing. No words so unable to talk beyond single words. Walking like a drunk sailor. Foot dragging. Mess.
I finally fell asleep on the couch. Best thing that could have happened really. I needed the rest. I woke up somewhat recovered. At least the shakes and bobbing had gone away. I was still dizzy and had trouble walking. While I had been sleeping hubs had been welding my exhaust back together. He pretty much fixed it. There is still a small hole in it but it no longer sounds like a ricer. He also attempted to fix the bathtub. He is being amazingly nice to me. He is funny. He SUCKS at apologizing. Instead he has figured out that if he is super nice to me for long enough I just get over being mad at him. Trouble is, it works. It is only lately that I have started to insist on an apology.
I can tell the resolution to this little tiff is going to take several days of negotiation. I've already fired the opening salvo earlier this evening, "you have six cars. I need a car that doesn't suck. Do you understand why I'm angry?" "No. I just paid off the house. I do everything for you." etc. This is an old argument pattern that started after I got sick so I didn't engage him any further. Best to wait him out for a bit so I tucked him in to bed instead.
I'm going to have to think on things for a bit and try again tomorrow. I'm still not totally sure what I want to resolve this. An apology? Him to understand why I resent not having a nice car while he has five of his own? Him to understand my illness better? Him to have more compassion around my illness? Fat chance of that last one happening. Compassion was never his strong suit. Sigh.... I need more sleep.
Oh, BTW, I have my eye on a nice bronze 2009 Mercedes wagon with a beige interior. Everything and everyone fits in it. It isn't black on black so it won't turn into an oven in the summer. I can afford it since the dealer is selling it at a super low price right now and it drives like a cream puff. LOVE it!! Hubs is brining it home for me to drive around the neighborhood tomorrow night. Maybe he isn't all that bad after all. Marriage is such a complicated thing sometimes.
Riding in a car is horrible for me. It makes me deteriorate into whimpering, sleepy, bobblehead doll that can't speak, walk or make decisions. So finding the right car is imperative. I've found that I need something that is quiet and has a very soft comfortable ride. This allows me to travel further before my symptoms deteriorate. Due to my fibro and osteoarthritis in my back, I need something that is very easy to steer. And to further complicate things, my wheelchair needs to fit in the trunk along with groceries. My husband is 6'8" and I'm 5'2" which makes finding a car that we both fit in almost impossible. Kid is the main driver with hubs secondary and I'm a very distant third. So the basic starting criteria are:
- drivers seat adjustable so both hubs and I can drive comfortably
- easy steering
- wheelchair fits with a full load of groceries and room for three people
- quiet squishy ride
- hub's head can't hit the roof and needs an unobstructed view while driving
- something I can easily get in and out of when I having a super bad day (no muscle control)
This past month I've been attempting to go car shopping. For me this is a super human feat. The trips takes hours and I'm usually a complete wreck by the end. I've tried to do some of the research on line but I can't retain information about the cars or remember which ones I've looked at or what features I like. Going out to physically car shop, I can only drive around parking lots and don't trust myself on roads. I also can't remember which cars I've tried out and which ones I've already rejected. This is a very difficult project for me but I desperately need a new car. Every time the power steering fails on my son he threatens to drag me out car shopping again.
Today we were supposed to go back and see a Mercedes wagon that it took me overnight to decide that I liked it. Things weren't going well. I already had a meltdown and we hadn't even left the house yet. I was scared that hubs would get mad. He had that face on. He kept saying he was fine. We had discussed finances, how much we could afford, how much the down-payment needed to be, how much the monthly load payments would be and even what the insurance payments would be. I thought we were all set. Now one thing to note: hubs own five vehicles that are lucky to see the light of day once or twice a month and his daily driver is a company van. I'm driving around in a dangerous car that shouldn't even be on the road.
On the onramp to the highway (we didn't even get to the dealership yet), his mad switch flipped on "The car is broken! My wife is broken! The bathtub is broken! I'm being forced to spend thousands of dollars against my will! Of course I'm angry!" Me, "It isn't like we didn't see this coming." (my car has had a this steering problem for over four years but it has only recently become dangerous) "We've been talking about buying a new car for over a year now." I shut up so things wouldn't get worse.
We got to the strip of road where all the auto dealers were. I asked if he wanted to look around the lots we missed yesterday. "Sure." I recognize that tone. He's going to pop soon. This isn't over yet. So we go cruising around the various lots, Lexus, Toyota, Chevy, Porsche (hey I can dream) and then we get to the Jeep lot. As we are driving around, I notice a Jeep which I don't recognize the model name and make a comment, "Hey, I've never heard of that model." And it starts, "What planet do you live on???? Don't you remember that one that lived in our driveway for a month??? I was fixing it for a friend of mine and you couldn't get your crap together to go for a ride in it!!!" I fall silent. "What happened to that smart woman I married??? Huh??? You can't remember a damn thing!!! I have to keep track of everything for you!!! What happened to you!?!?!" The words still hurt even as I type them hours later. Needless to say I just broke out in tears. He had to pull into the McD's lot to try and talk with me but it was too late. I was a mess. "I'm not stupid. I'm sick. I'm REALLY sick. It affects my brain." He took me home where I devolved into an incoherent CFS pile of bobblehead jello. I was so upset that my CFS symptoms just escalated to the worst I've been in almost a year. Shakes. Head bobbing. No words so unable to talk beyond single words. Walking like a drunk sailor. Foot dragging. Mess.
I finally fell asleep on the couch. Best thing that could have happened really. I needed the rest. I woke up somewhat recovered. At least the shakes and bobbing had gone away. I was still dizzy and had trouble walking. While I had been sleeping hubs had been welding my exhaust back together. He pretty much fixed it. There is still a small hole in it but it no longer sounds like a ricer. He also attempted to fix the bathtub. He is being amazingly nice to me. He is funny. He SUCKS at apologizing. Instead he has figured out that if he is super nice to me for long enough I just get over being mad at him. Trouble is, it works. It is only lately that I have started to insist on an apology.
I can tell the resolution to this little tiff is going to take several days of negotiation. I've already fired the opening salvo earlier this evening, "you have six cars. I need a car that doesn't suck. Do you understand why I'm angry?" "No. I just paid off the house. I do everything for you." etc. This is an old argument pattern that started after I got sick so I didn't engage him any further. Best to wait him out for a bit so I tucked him in to bed instead.
I'm going to have to think on things for a bit and try again tomorrow. I'm still not totally sure what I want to resolve this. An apology? Him to understand why I resent not having a nice car while he has five of his own? Him to understand my illness better? Him to have more compassion around my illness? Fat chance of that last one happening. Compassion was never his strong suit. Sigh.... I need more sleep.
Oh, BTW, I have my eye on a nice bronze 2009 Mercedes wagon with a beige interior. Everything and everyone fits in it. It isn't black on black so it won't turn into an oven in the summer. I can afford it since the dealer is selling it at a super low price right now and it drives like a cream puff. LOVE it!! Hubs is brining it home for me to drive around the neighborhood tomorrow night. Maybe he isn't all that bad after all. Marriage is such a complicated thing sometimes.
Saturday, November 2, 2013
Thump Thump
Like others with CFS/ME I have weird heart issues. I have an elevated heart rate at rest, 90-98bpm. I get dizzy with prolonged standing (the time period gets shorter as I my CFS gets worse) and have to sit down but haven't been diagnosed with POTS or NMH. The cardiac guy did mention vascular insufficiency as a possible cause but nothing ended up in my official record. I find that compression stockings do help and I wear them quite frequently. I do get random chest pains, heart racing, heart pounding and butterfly in the chest effects. All of which occur more frequently on my bad days.
I bring this all up because I just watched three vids by a Dutch cardiologist that treats CFS/ME patients. Turns out I have nothing to worry about as far as my heart and lungs go. It is just my CNS acting up. Which dovetails into a paper I've been trying to read on CNS and brain inflammation. (More on that later.) So here are the three vids. I found them to be very informative. Based on the info I just learned I probably won't go to a cardiologist since they probably won't find anything. It is just my CFS/ME kicking my butt as usual.
Vid 21 ME/CFS and The Heart: http://www.youtube.com/watch?v=OwXEKqB-XTk
Vid 22 ME/CFS and Palpitations: http://www.youtube.com/watch?v=73sR6vdmLv4
Vid 23 ME/CFS and Cardiac Arrhythmias: http://www.youtube.com/watch?v=mfhZ7tUUo_c
I bring this all up because I just watched three vids by a Dutch cardiologist that treats CFS/ME patients. Turns out I have nothing to worry about as far as my heart and lungs go. It is just my CNS acting up. Which dovetails into a paper I've been trying to read on CNS and brain inflammation. (More on that later.) So here are the three vids. I found them to be very informative. Based on the info I just learned I probably won't go to a cardiologist since they probably won't find anything. It is just my CFS/ME kicking my butt as usual.
Vid 21 ME/CFS and The Heart: http://www.youtube.com/watch?v=OwXEKqB-XTk
Vid 22 ME/CFS and Palpitations: http://www.youtube.com/watch?v=73sR6vdmLv4
Vid 23 ME/CFS and Cardiac Arrhythmias: http://www.youtube.com/watch?v=mfhZ7tUUo_c
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