My recovery from last year is going really slow. However, I'm coughing way less. We have a buyer for our old house but we haven't closed on it yet. Hubs keeps going over there every weekend so my cough hasn't gone away completely yet. The concept of his showering and changing clothes after being over there has never occurred to him. I'm lucky if he changes his shirt and that only happens if I bug him. Then he sleeps in our bed and contaminates the sheets and blankets. So I'm still coughing. Occasionally I have to use my asthma inhaler. But things are way better than before. A pack of cough drops can last me almost an entire week instead of one day. I'm using my inhaler about once a week instead of daily. I do have setbacks if I'm not careful when unpacking boxes. My son gets it so he showers, changes clothes or handles crap from the old house that hasn't been decon'ed yet. He can see the direct relation between his exposure and my coughing fits. Hubs just gets annoyed that I'm coughing rather than helping out. Sigh.....
I'm still pretty crashed. I'm sofa bound. I'm cooking very simple meals still. Luckily it's summer so we can grill a lot so all I have to make are sides or salads. On my good days I'm scrambling eggs and making coffee for breakfast in addition to the simple dinners. I'm getting out a bit when my son is around (he's currently flying back and forth between here and CO for his work). We go for coffee and late breakfast almost daily when he is here. I get to the supermarket once a week and have just started to go to the farmers market roughly twice a month. I'm not using enough fresh veg to go more than that. It is a waste of spoons. I'm still eating way too much take out but that has been improving. I actually feel better on days where we eat in. Even though I'm not making everything from scratch I'm buying mostly organic nonGMO foods and it makes a marked difference in how I feel. I'm considering hiring a prep cook to batch cook for me. My son has a friend that is interested. Haven't gotten around to arranging it of course but I'm hoping it will happen sooner than later.
After one bust, I managed to find a chiro I really like. (That is a story for another day.) I'm doing phone conferencing with my sleep doc and I FINALLY got it to work so I no longer have to travel to Jamaica Plain to his office. I've an apt with a potentially new internist. She works with Emerson Hospital and has a background in rheumatology so might be familiar with fibro. Here's hoping. My old doc, while not perfect, actually had some exposure to CFS/ME through a relative that ran a clinic for patients. I need some follow-up bloodwork from her: cholesterol, thyroid, vitD, and iron. Tell her/teach her about my illness and get the "lose weight" lecture. I still haven't managed to fill out all the paperwork yet.
Presently I'm push/crash cycling so I have to work on that.
I've been trying to improve my sleep space. I was sleeping in the guest bedroom but my son has been visiting more and more since he no longer has a NYC apt. So far I've purchased blackout drapes for the master bedroom which work great! I bought a wedge pillow which is comfy but still smells weird so I've got it degassing. I think the waterbed still needs some water removed as it is too hard. I still have to find a solution for overheating with the mattress and pillows. Probably need another cotton or wool filled pillow and a cotton or wool filled mattress cover. Right now I wake up and I'm soaked in sweat. I found that if I sleep across the bed I do better than if I sleep normally in it. I also bought an AC unit for the masterbed but it isn't hooked up yet. Turns out the central AC unit is too small for the house and only cools the first floor adequately. The solution is to put a second unit in the attic to cool the second floor. The portable AC is a nice stop gap measure until we refurb the central AC in a year or two. Plus, typically I'm the only one that wants to sleep in a refrigerator. Sleeping during daylight hours means the bedroom I'm in heats up to oven temps which wakes me up and makes me miserable. Both guys sleep at night so the bedrooms aren't too bad for them.
Once I'm done with the masterbed, I'm going to fix the guest bedroom because damn that gel bed is AWESOME!!! Plus I bought the adjustable frame to go under it so I can raise the head and foot of the bed to get it just right for my aches and pains. All the room needs is some new blackout blinds. It is nice to have a second space to sleep in. I'm very comfortable there and sleep the best in that room. Hopefully I can upgrade the masterbed so I'm equally comfortable sleeping in that room also. It is a pain to drag my CPAP gear back and forth between the two bedrooms. Until my kid gets another apt somewhere he'll be here most weekends and some weeks so I get kicked out the room every four days or so.
Other irons in the fire: I'm trying Dr Teitelbaum's protocol for increasing blood volume. I'm still experiencing dizzy spells even with my period problem solved. My biggest hinderance lately is dizziness on standing and getting out of breath really easily. I figure fixing my blood volume will help. So I ordered Vitalyte (formerly known as Gookinaid) and D-ribose powder. I already have CoQ10 and zinc. I like the electrolyte powder. I bought lemon. I add the D-ribose to it and have been drinking two glasses a day. I'm already seeing improved brain function. That is typically the precursor to improved physical function. I haven't started the CoQ10 yet. The protocol also calls for acetyl L carnitine but it is contraindicated in folks with thyroid issues so I'm skipping that part. I might introduce it at a very low dose after I get my thyroid tested by my new doc. That way I'll have a baseline and see how the supplement affects my thyroid.
I'm also trying to sunbathe more. I haven't been going outside due to the heat. I used to sunbathe late in the day after 4pm at my old house but my deck goes into shade pretty early due to all the trees so I can't sunbathe late in the day at my new place. I'm now trying to go out no matter what for 5-15mins around 3:30pm. It isn't long but it is better than nothing and I can tolerate the heat for that time frame particularly since I'm stepping back into the nice AC. I always take ice water outside with me. And I get almost naked so the sun exposure is all over and I get a good dose of sun in a short period of time.
That is about it. This post has gotten way longer than I intended. But I have plans. Lots of plans. I was getting a bit depressed but decided to take the bull by the horns and try to improve things for myself starting with better sleeping conditions. Then food, then sun, then supplements. Maybe new meds after I see my new doc. Hope has returned! Woot!
Things I want to do but haven't even thought about yet; get a new dentist, get a new therapist, hire a house cleaner, detox from mold.
Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts
Monday, July 24, 2017
Monday, January 11, 2016
Gait and CFS/ME
One of the hallmarks of this illness is the fact that we can NOT multitask. One of Dr. Bell's tests was asking his patients random questions while clicking a pen. That pen clicking was just enough to distract the patient and make them unable to answer questions. It was one of his low tech tests for CFS/ME as no other patients would be affected by pen clicking as severely as PWME. So from his unscientific country doctor test we go to the scientific study that show this to be true:
That paper basically says that when you distract a PWME while they are walking they stop walking as they can't walk and pay attention to something else at the same time. Personally I've known this since my illness started. On my severe days where I have trouble walking at all, the least little thing distracts me and I freeze in place until I can refocus on walking again. It is like the pen clicking test. The least little distraction causes me to stop walking and stand like a statue. My brain can't handle processing that much information at the same time. Walking is one of the more difficult tasks we do as humans which means that it takes a lot of brain power to perform the act of walking. PWME just don't have the processing capability to walk, talk and chew gum at the same time.
Reduced gait automaticity in female patients with chronic fatigue syndrome: Case-control studyJan b Eyskens, MSc PT, DO, Pr Ph;1* Jo Nijs, PhD;2 Kristien Wouters;3–4 Greta Moorkens, MD, PhD1,4
That paper basically says that when you distract a PWME while they are walking they stop walking as they can't walk and pay attention to something else at the same time. Personally I've known this since my illness started. On my severe days where I have trouble walking at all, the least little thing distracts me and I freeze in place until I can refocus on walking again. It is like the pen clicking test. The least little distraction causes me to stop walking and stand like a statue. My brain can't handle processing that much information at the same time. Walking is one of the more difficult tasks we do as humans which means that it takes a lot of brain power to perform the act of walking. PWME just don't have the processing capability to walk, talk and chew gum at the same time.
Tuesday, February 24, 2015
Ms Period Meet Mr ME
Ever since I contracted CFS/ME/SEID my period has been wonky. There has been quite a bit of debate among my doctors as to whether it is CFS or menopause. The cause doesn't really matter to me but the effects have been weird and occasionally disturbing. Basically I fluctuate between three states at random intervals: no period at all, spotting and deluge. I've gone as long as six month with no period and also had one very heavy period for six weeks where I had to be put on prescription progesterone since I was becoming anemic from all the blood loss. Yuck!
Well, science has caught up with reality
http://www.eurekalert.org/pub_releases/2015-02/tnam-sfl020315.php
and
http://www.ncbi.nlm.nih.gov/pubmed/25647777
Well, science has caught up with reality
http://www.eurekalert.org/pub_releases/2015-02/tnam-sfl020315.php
and
http://www.ncbi.nlm.nih.gov/pubmed/25647777
Friday, October 10, 2014
Probiotics
There are tons of probiotics on the market and I really haven't looked into them. I try to get most of them through eating sauerkraut and fermented beets and drinking kombucha. The bug count is orders of magnitude higher in food than pills so are a much better source. I keep buying kefir but don't drink it regularly. I do use it to make creamy salad dressings and smoothies.
Anyway, I do have four probiotics that I try (not very diligently) to rotate through:
Anyway, I do have four probiotics that I try (not very diligently) to rotate through:
- Saccharomycis boulardii: this was prescribed to me by my food knowledgeable CFS/ME doctor and is available in the fridge section of your health food store
- Biffida: my treating CFS doc put me on this after my stool test showed I was deficient
- Fermented fish oil: recommended by real foodies everywhere
- Lactobacillus plantarum: which I discovered in this article and thought might be helpful in my case http://cfstreatment.blogspot.com/2014/09/what-is-hiding-in-your-gut-more-on.html
As part of my new action plan, probiotics are going to be a big part of healing my gut further. I've come a long way in this department but am still having the occasional heartburn and am now having trouble with cruciferous vegetables. Even my beloved sauerkraut is giving me heartburn. Sigh.... Time for a revisit.
Saturday, August 23, 2014
CFS vs. Broccoli
Several years ago I tried (and failed spectacularly) to follow Dr. Wahls diet. In it she calls for NINE cups of vegetables with three cups specifically cruciferous vegetables; i.e. broccoli, cauliflower, cabbage, brussel sprouts, etc. I ate all of these growing up so I dove in with gusto. With each meal, I had something from the cruciferous family. With each meal, my heartburn got worse. It got so bad that it felt like someone was holding a blowtorch to my chest and it was set on max burn. Holy cow did it hurt. I called my integrative doc and asked what the heck was happening. He asked about my diet and I told him I had switched to Wahls' protocol. He immediately told me that the heartburn was directly related to the cruciferous vegetables and that I had to cut back.
Nutso. So much for that plan. I knew of two people that had their CFS drop to non-existent or manageable levels after incorporating huge amounts of vegetables in their diet. Here I was stuck with rip my chest out heartburn.
Now, two years later, I find this little gem:
"Is Broccoli Good For You?"
Turns out that a chemical in cruciferous vegetables:
So maybe eating broccoli isn't such a good idea for me. Maybe my heartburn is trying to tell me something. One of the reasons that I trusted Dr. Wahls is that she has done extensive research on food, diet and MS. This is how she developed her diet plan. Makes me wonder how she decided that we need such a huge amount of cruciferous vegetables in our diet to make us healthy. This article is the complete antithesis of her work.
In my case it doesn't really matter because right now I can't eat much of any of the cruciferous veg. Even sauerkraut is giving me heartburn two hours later. Dang. I am so not happy about this.
Nutso. So much for that plan. I knew of two people that had their CFS drop to non-existent or manageable levels after incorporating huge amounts of vegetables in their diet. Here I was stuck with rip my chest out heartburn.
Now, two years later, I find this little gem:
"Is Broccoli Good For You?"
Turns out that a chemical in cruciferous vegetables:
- Poisons mitochondria (cell energy generators)
- Inhibits microsomal enzymes in the endoplasmic reticulum (cellular manufacturing and detoxifying centers)
- Generates reactive oxygen species (these are damaging “pro-oxidants”)
- Interferes with thyroid iodine absorption
- Disrupts epithelial barriers (can poke holes in sheets of cells)
- Depletes glutathione levels (the most important antioxidant inside our cells)
So maybe eating broccoli isn't such a good idea for me. Maybe my heartburn is trying to tell me something. One of the reasons that I trusted Dr. Wahls is that she has done extensive research on food, diet and MS. This is how she developed her diet plan. Makes me wonder how she decided that we need such a huge amount of cruciferous vegetables in our diet to make us healthy. This article is the complete antithesis of her work.
In my case it doesn't really matter because right now I can't eat much of any of the cruciferous veg. Even sauerkraut is giving me heartburn two hours later. Dang. I am so not happy about this.
Thursday, July 31, 2014
A MTHFR Girl
This is a TMI post about girl stuff. Consider yourself warned.
So roughly two months ago I started Yasko's short cut protocol for MTHFR defects. I'm taking her
So roughly two months ago I started Yasko's short cut protocol for MTHFR defects. I'm taking her
- All in One Vitamin
- Ultimate B Complex
- Phosphytidyl Serine Complex
- Be Calm Spray (GABA/Glutamate balance)
- Resveratrol Spray
- Amino Acids Spray
I'm also taking
- Lithium Oratate (for deficiency and per protocol)
- Ubiqinol (per short cut protocol)
- Zinc (for deficiency)
- Iodine (for deficiency)
- Potassium (Celebrex depletes potassium and it helps my muscles)
- Grape Seed Extract (per protocol)
- NAC (left over from CFS/ME protocol: good for mito function)
I've been taking this cocktail along with my two meds for just over two months now. I've been having trouble with my period since January sometime. After going on the protocol it kicked into high gear. Constant bleeding and passing clots. I became anemic and got very dizzy and tired from it. I ended up in the ER and at the ob/gyn's office. I had an ultrasound done (they found fibroids but nothing really large): I had a biopsy done (came back clean). The doc declared estrogen dominance and gave me prescription strength progesterone. I wasn't too worried about it since progesterone is on Yasko's list of optional supplements for balancing GABA and Glutamate.
Four pills later and I felt like crap. I was back in bed again unable to do anything. I looked into the MTHFR protocol. Turns out women start menstruating when they start the protocol and it is often very heavy. It eventually stops but I found many stories of this happening so it wasn't just a single random person. I just wish it had been mentioned somewhere so I didn't have to get all the tests done and be worried that I might have cancer or some such. Geesh!
Anyway, after finding this out I stopped taking the pills since they were making my CFS/ME so much worse. The heavy bleeding had abated by this point anyway. Woot! Other than the odd random spotting I've been period free for almost two weeks now. Woohoo!!
Having multiple things wrong at the same time makes diagnosis and tracking that much harder. CFS/ME, fibro, osteoarthritis, floxing, possible menopause and now MTHFR protocol thrown in for good measure. Dear god the pain. The blood. The hot flashes. Just make it stop.
At least the protocol is helping. There has been a steady and marked improvement in my CFS/ME symptoms since starting the protocol. Now if my girl parts would just behave themselves and I could cut down the joint pain from the floxing I would be pretty happy.
Friday, June 27, 2014
CFS and the HPA Axis
Every system in my body went wonky when I contracted CFS. Thing is everything is so interwoven and interconnected I'm never sure which string to pull on first to mitigate some of the symptoms.
Oh and if we are under stress (read that as "sick") then the little amount of pregnenolone we do manage to make is converted into cortisol. So for us CFSers it is pretty much a lose-lose situation. So what happens downstream if we don't have enough pregnenolone as women (men are different)?
The gut issues we almost universally have as CFSers also gets into the act:
As for myself, I've tested negative for everything except leaky gut. I have done what I can with my diet and my gut is definitely doing better than five years ago. However, I'm not perfect as I've mentioned before and cheat WAY too much. I'm not sure I can ever climb back on the perfect Paleo bandwagon.
While there is lots of good basic info in the podcast, the author never really gets around to saying how to treat this properly. People even complained about this in the comment section but there was nothing forthcoming from the author. I did find it interesting how so much of the CFS issues overlap with HPA problems in the general population.
Here is the link to the podcast: http://chriskresser.com/the-right-and-wrong-way-to-treat-hormone-imbalance
Here another somewhat unhelpful article on how to fix the HPA when you have CFS: http://chriskresser.com/chronic-fatigue-syndrome-and-stress-a-new-frontier-for-treatment
Mind that the article is written by a dietitian and not a physician. Basically she covers the use of low dose hydrocortisone (which I did with mixed results: not much improvement but I did win an extra 20 pounds of body weight), getting adequate sleep (but she has NO idea about the severity of sleep dysfunction in CFSers and offers only the usual sleep advice) and reducing stress levels via meditation. Like I said not helpful. I need to do some reading on other sites regarding fixing the HPA axis preferably without drugs.
Even though these two pieces didn't help with fixing the problem I do like it when I learn what the problem actually is. That knowledge gives me things I can search for on Dr. Google.
Here is an interesting tidbit on why sex hormone regulation goes on the fritz.
the enzyme that converts cholesterol to pregnenolone is limited, and it requires a lot of ATP, which is cellular energy. It’s an energy-intensive process. That means that the amount of pregnenolone we can make in the body is limitedTurns out that pregnenolone is the master hormone which regulates everything else in the body. Guess what we have a shortage of with CFS? Yup, ATP. We have very limited cellular energy. I must interject here that my general health did improve when I added more cholesterol and fats to my diet. However, before I can say definitively that it made a huge difference I have to say that I made the switch to Paleo at that point so other things may have been a factor in the improved health. Anyhoo, I digress. Back to the topic at hand....
Oh and if we are under stress (read that as "sick") then the little amount of pregnenolone we do manage to make is converted into cortisol. So for us CFSers it is pretty much a lose-lose situation. So what happens downstream if we don't have enough pregnenolone as women (men are different)?
- low progesterone-high estrogen
- possible PCOS
- hair loss
- facial hair growth
- loss of sex drive
- irregular periods
- mood imbalance
The gut issues we almost universally have as CFSers also gets into the act:
Impaired gut function can mess with hormones in several different ways, so if you have a parasite or a fungal overgrowth or dysbiosis or leaky gut, that causes inflammation. Inflammation suppresses the function of the hypothalamus and the pituitary in the brain, which produce the stimulating hormones, and then it also suppresses the function of the adrenals and the ovaries and the gonads in men that produce the actual hormones. Inflammatory cytokines can also cause hormone resistance,Interesting that he mentions inflammatory cytokines which are a known problem in CFSers. Another strike against us.
As for myself, I've tested negative for everything except leaky gut. I have done what I can with my diet and my gut is definitely doing better than five years ago. However, I'm not perfect as I've mentioned before and cheat WAY too much. I'm not sure I can ever climb back on the perfect Paleo bandwagon.
While there is lots of good basic info in the podcast, the author never really gets around to saying how to treat this properly. People even complained about this in the comment section but there was nothing forthcoming from the author. I did find it interesting how so much of the CFS issues overlap with HPA problems in the general population.
Here is the link to the podcast: http://chriskresser.com/the-right-and-wrong-way-to-treat-hormone-imbalance
Here another somewhat unhelpful article on how to fix the HPA when you have CFS: http://chriskresser.com/chronic-fatigue-syndrome-and-stress-a-new-frontier-for-treatment
Mind that the article is written by a dietitian and not a physician. Basically she covers the use of low dose hydrocortisone (which I did with mixed results: not much improvement but I did win an extra 20 pounds of body weight), getting adequate sleep (but she has NO idea about the severity of sleep dysfunction in CFSers and offers only the usual sleep advice) and reducing stress levels via meditation. Like I said not helpful. I need to do some reading on other sites regarding fixing the HPA axis preferably without drugs.
Even though these two pieces didn't help with fixing the problem I do like it when I learn what the problem actually is. That knowledge gives me things I can search for on Dr. Google.
Wednesday, June 11, 2014
Taurine and CFS/ME
Been a while but I went through one of my withdrawal phases. It happens.
Anyway, during my absence from here I've been doing tons of reading on MTHFR, genetics and supplements. Details to follow at a later date. Suffice it to say I'm seeing marked improvement in brain function now that I've been on Amy Yasko's "short cut" protocol for two months. I'm reading again. Woot!! Still not tons of energy but I'm having more good days more often and shorter recovery periods after my bad ones. Improvement is slow but steady. Double Woot!!
On to taurine...
I've been fascinated with taurine ever since my foray into trying to understand why Cipro made my CFS symptoms go into remission. The only thing I could find is that it readjusted the glutamate/GABA balance in the brain which resulted in reduced brain inflammation. Since I had a severe reaction to Cipro continuing to use it wasn't an option so I started looking for other ways to rebalance glutamate/GABA. I ran across a couple of sentences in Dr. Wahls' book Minding Your Mitochondria that taurine supplementation would help. However, it didn't go into why so I started supplementing with it with minor but noticeable improvement.
In the meantime, a Japanese study came out showing that yes indeed brain inflammation was present in CFS/ME patients. Nice to have my own suspicions confirmed (my CFS symptoms improved dramatically after steroid shots for an unrelated problem but only lasted the month that the shots were effective for). Actual paper: http://www.ncbi.nlm.nih.gov/pubmed/24665088
Today I ran across this presentation by Dr. Stephanie Seneff (BA in biophysics, EE in Electrical Engineering and PhD in Computer Science all from MIT and she is currently on staff at MIT: i.e. a very very smart woman) on Taurine and it all ties neatly back in on itself: taurine, brain inflammation, sun exposure, nitrous oxide cycle, mitochondrial dysfuction, toxin buildup, etc, etc, etc.
http://people.csail.mit.edu/seneff/WAPF_Slides_2012/taurine_2012.pdf
It gets a little technical but is fascinating how this all appears to be interlaced. Looks like I'll be adding taurine back in to my supplement regimen. I had paired down to only Yasko's supplements so that I could see how the raw protocol worked and so that I didn't have any drug/supplement interactions (which did happen. twice. yuk!). Now I'll add it back in and cross my fingers. Yasko claimed that taurine could build up in the brain but Seneff says that is a good thing. My impression is that Seneff has a better grip on taurine chemistry than Yasko does so I'm adding the stuff back in. And the Grand Experiment continues....
Anyway, during my absence from here I've been doing tons of reading on MTHFR, genetics and supplements. Details to follow at a later date. Suffice it to say I'm seeing marked improvement in brain function now that I've been on Amy Yasko's "short cut" protocol for two months. I'm reading again. Woot!! Still not tons of energy but I'm having more good days more often and shorter recovery periods after my bad ones. Improvement is slow but steady. Double Woot!!
On to taurine...
I've been fascinated with taurine ever since my foray into trying to understand why Cipro made my CFS symptoms go into remission. The only thing I could find is that it readjusted the glutamate/GABA balance in the brain which resulted in reduced brain inflammation. Since I had a severe reaction to Cipro continuing to use it wasn't an option so I started looking for other ways to rebalance glutamate/GABA. I ran across a couple of sentences in Dr. Wahls' book Minding Your Mitochondria that taurine supplementation would help. However, it didn't go into why so I started supplementing with it with minor but noticeable improvement.
In the meantime, a Japanese study came out showing that yes indeed brain inflammation was present in CFS/ME patients. Nice to have my own suspicions confirmed (my CFS symptoms improved dramatically after steroid shots for an unrelated problem but only lasted the month that the shots were effective for). Actual paper: http://www.ncbi.nlm.nih.gov/pubmed/24665088
Today I ran across this presentation by Dr. Stephanie Seneff (BA in biophysics, EE in Electrical Engineering and PhD in Computer Science all from MIT and she is currently on staff at MIT: i.e. a very very smart woman) on Taurine and it all ties neatly back in on itself: taurine, brain inflammation, sun exposure, nitrous oxide cycle, mitochondrial dysfuction, toxin buildup, etc, etc, etc.
http://people.csail.mit.edu/seneff/WAPF_Slides_2012/taurine_2012.pdf
It gets a little technical but is fascinating how this all appears to be interlaced. Looks like I'll be adding taurine back in to my supplement regimen. I had paired down to only Yasko's supplements so that I could see how the raw protocol worked and so that I didn't have any drug/supplement interactions (which did happen. twice. yuk!). Now I'll add it back in and cross my fingers. Yasko claimed that taurine could build up in the brain but Seneff says that is a good thing. My impression is that Seneff has a better grip on taurine chemistry than Yasko does so I'm adding the stuff back in. And the Grand Experiment continues....
Tuesday, March 18, 2014
MTHFR
MTHFR or MethylTetraHydroFolate Reductase Deficiency or as I like to call it the MotherF**ker defect (yeah, I know, rude, politically incorrect but damn if this doesn't screw me up good).
I have at least two defects in my MTHFR genetic pathway. This inhibits methylation and allows homocysteine to build up in my system. Here is a series of vids explaining the genetic mutations and a treatment protocol to aid with symptoms. Interestingly I've added a lot of the supplements already and those are the ones I've noticed have done me the most good. I'm only missing five off his entire list.
Part 1
http://www.youtube.com/watch?v=ZA8GUIRqIkE
Part 2
http://www.youtube.com/watch?v=BM3RXJ28I2Q
Part 3
http://www.youtube.com/watch?v=nYoGrqdMCaU
Part 4
http://www.youtube.com/watch?v=JEeedfavEeE
Sorry, I tried to embed the vids but it didn't work for some weird reason. If the links don't work just search for Dr. Neil Rawlins on the YouTube page and they will pop up.
I have at least two defects in my MTHFR genetic pathway. This inhibits methylation and allows homocysteine to build up in my system. Here is a series of vids explaining the genetic mutations and a treatment protocol to aid with symptoms. Interestingly I've added a lot of the supplements already and those are the ones I've noticed have done me the most good. I'm only missing five off his entire list.
Part 1
http://www.youtube.com/watch?v=ZA8GUIRqIkE
Part 2
http://www.youtube.com/watch?v=BM3RXJ28I2Q
Part 3
http://www.youtube.com/watch?v=nYoGrqdMCaU
Part 4
http://www.youtube.com/watch?v=JEeedfavEeE
Sorry, I tried to embed the vids but it didn't work for some weird reason. If the links don't work just search for Dr. Neil Rawlins on the YouTube page and they will pop up.
Monday, March 17, 2014
ME and My Genes
I've been putting off writing this post for a myriad of reasons but mostly because it is seriously complicated and I haven't sorted all of it out yet. Also I'm in the middle of my winter crash so no energy to think about it much and not enough brain power to write about it coherently. As a result this might turn out a bit rambly.
At the end of last year, I sent my spit off to 23andMe to have a very small subset of my genes decoded. I got the results back in January. However, before I get to the interesting bits I'm going to write about genetics in general because, in this case, context is VERY VERY important.
Right now decoding our genes is in its infancy so interpretation is still quite shaky and often wrong. While it sent me into geek heaven to have it done, I also have a fairly good understanding that the results are probabilistic and NOT deterministic. What does that mean? Genes are a set of instructions on how to build a cell. Each time a cell is built it only uses a subset of those instructions. We have yet to fully understand why some instructions are used and others ignored. This is the new field of epigenetics and the basic idea is that specific genes are expressed (turned on and off) after environmental exposures such as food, toxins, exercise, etc. So even when they say that you have a mutation at such and such a location, while you do indeed have the mutation, you may or may not get the illness/trait associated with it. So in reality it is a bit of a crap shoot whether these predictions will come true or not. The short version is that our genes/cells are influenced strongly by our environment, such as food, toxins, exercise, etc. Whether a particular gene actually gets expressed (flipped on/replicated), can only be predicted as a percentage not an actuality. That said, some mutations are more readily predicted than others so genetics tests are ranked by probability. For a more in depth view I suggest watching PBS' Cracking Your Genetic Code which is available on their website and on Netflix.
So, be warned, if you decide to go this route: 1) once the answers are seen they can not be unseen (i.e. do you really want to know the probability of getting breast cancer or Alzheimer's?) and 2) it is only a prediction and not a concrete reality.
On the flip side if the genetic markers are there and you are having symptoms that line up with those markers you might be able to adjust your treatments so that you end up improving.
Okay, now the juicy details....
Since the FDA has gone after 23andMe, they have stopped producing the medical reports but they will still supply you with the raw genetic data. This is what I got. I downloaded my raw data and then paid Promethease $5 to translate it for me. The interface is extremely wonky and you have to watch the tutorial vids to make any sense of it at all. There are more expensive interpretation services out there but I haven't tried them yet. I'm guessing that the interfaces are a tad better. Anyway....
The answers come ranked by probability. The most likely being first which is normally your gender (this gets into an entirely different long discussion about intersex, transgender, etc). Promethease ranks them by an arbitrary probability number. I'm not entirely sure what they use to generate this number but basically I chose to only pay attention to those of rank of 3 or higher. My gender was rank 3.9.
Their database is incredibly detailed and interlinked so you can sort by disease, rank, probability, number of papers published regarding that particular mutation, and many others. I decided to look at rank 3 or higher but also with three or more published papers associated with that mutation. Several interesting things popped out:
At the end of last year, I sent my spit off to 23andMe to have a very small subset of my genes decoded. I got the results back in January. However, before I get to the interesting bits I'm going to write about genetics in general because, in this case, context is VERY VERY important.
Right now decoding our genes is in its infancy so interpretation is still quite shaky and often wrong. While it sent me into geek heaven to have it done, I also have a fairly good understanding that the results are probabilistic and NOT deterministic. What does that mean? Genes are a set of instructions on how to build a cell. Each time a cell is built it only uses a subset of those instructions. We have yet to fully understand why some instructions are used and others ignored. This is the new field of epigenetics and the basic idea is that specific genes are expressed (turned on and off) after environmental exposures such as food, toxins, exercise, etc. So even when they say that you have a mutation at such and such a location, while you do indeed have the mutation, you may or may not get the illness/trait associated with it. So in reality it is a bit of a crap shoot whether these predictions will come true or not. The short version is that our genes/cells are influenced strongly by our environment, such as food, toxins, exercise, etc. Whether a particular gene actually gets expressed (flipped on/replicated), can only be predicted as a percentage not an actuality. That said, some mutations are more readily predicted than others so genetics tests are ranked by probability. For a more in depth view I suggest watching PBS' Cracking Your Genetic Code which is available on their website and on Netflix.
So, be warned, if you decide to go this route: 1) once the answers are seen they can not be unseen (i.e. do you really want to know the probability of getting breast cancer or Alzheimer's?) and 2) it is only a prediction and not a concrete reality.
On the flip side if the genetic markers are there and you are having symptoms that line up with those markers you might be able to adjust your treatments so that you end up improving.
Okay, now the juicy details....
Since the FDA has gone after 23andMe, they have stopped producing the medical reports but they will still supply you with the raw genetic data. This is what I got. I downloaded my raw data and then paid Promethease $5 to translate it for me. The interface is extremely wonky and you have to watch the tutorial vids to make any sense of it at all. There are more expensive interpretation services out there but I haven't tried them yet. I'm guessing that the interfaces are a tad better. Anyway....
The answers come ranked by probability. The most likely being first which is normally your gender (this gets into an entirely different long discussion about intersex, transgender, etc). Promethease ranks them by an arbitrary probability number. I'm not entirely sure what they use to generate this number but basically I chose to only pay attention to those of rank of 3 or higher. My gender was rank 3.9.
Their database is incredibly detailed and interlinked so you can sort by disease, rank, probability, number of papers published regarding that particular mutation, and many others. I decided to look at rank 3 or higher but also with three or more published papers associated with that mutation. Several interesting things popped out:
- I have two mutations in MTHFR
- Due to one or more mutations I have an inactive CYP2C9 gene
- I'm of northern European decent.
Now the MTHFR is what is causing the methylation cycle problems. Since I have both the symptoms and a high probability of MTHFR issues it stands to reason that this one is true and active in my system. I still have lots to read about MTHFR since there are entire websites devoted to the defect and what to do about it. More than likely this will be the bulk of my research for the coming year. Right now I am using methyl B12 and methyl folate and staying away from folic acid. These supplements will replace what my body can not produce due to the mutations.
Another issue with MTHFR, is that I have to get my homocysteine levels checked regularly. Right now mine are normal.
Another issue with MTHFR, is that I have to get my homocysteine levels checked regularly. Right now mine are normal.
The CYP2C9 causes a liver problem. This is another one I have to research more fully but as of right now I know that a lot of the newer drugs assume that you have a working CYP2C9 so that they can be metabolized. Since mine is shut off I can't metabolize these drugs and they build up in my system and cause side effects. In particular I can't take Warfarin, Plavix, Tamoxifen and most of the NSAIDs. Basically I need to assemble a list of drugs I shouldn't take.
I'm not completely sure but it also might cause problems with general detoxification but I have to look in to that for verification. (It is one of those muddy memories that I can't find the citation for to back it up.)
I'm not completely sure but it also might cause problems with general detoxification but I have to look in to that for verification. (It is one of those muddy memories that I can't find the citation for to back it up.)
Of course I had a handful of other results but they had a lower risk to them and I haven't done enough research to figure out if they are significant or not. Just for your curiosity, I'm at increased risk for type 2 diabetes, melanoma, celiac, breast cancer and coronary artery disease. These are the ones I'm not worrying about since I don't think there is enough statistical evidence to back up the probability that I'll actually contract these illnesses. The other two, MTHFR and CYP2C9, I believe are in full swing and require my immediate attention.
Interestingly, my CFS treating doc backed me up on this and has referred me to a geneticist. I haven't made an appointment yet. I've been sick on sick on sick lately and need to wait until I feel better to make the trip into Boston to see the guy.
I was hoping for a more thorough ancestry but I have a 40-60% chance of being of northern European decent which is the area of Germany, Poland, Norway, etc. I find this very interesting. I know that I'm English for at least five generations. Maybe I'm from Viking stock. Curiouser and curiouser....
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
Tuesday, August 20, 2013
CFS vs My Left Knee
About five years ago, when I was healthy and relearning how to figure skate, I spent my entire practice session doing three turns. This involves a nasty torquing of the knee. For some reason my left knee took issue with this and blew up like a balloon. After that practice session, it was never the same again. I had multiple cortisone shots into it which didn't last very long so I turned to my awesome acupuncturist, who kept me skating without resorting to surgery.
Step forward five years to January of this year and the raging UTI that put me into the hospital. But what does this have to do with my left knee you ask? Bear with me... To cure this nasty infection, I had an IV of levofloxacin and was sent home with Cipro pills. A week later I was back in the hospital and this time had an IV of Cipro and was sent home with Bactrim pills. Not only did this get rid of my UTI but I made a huge recovery of function from my then severe CFS symptoms. This left the docs scratching their heads and me going for pee tests, poop tests and even SIBO tests. Of which, nothing showed up other than I needed more Bifida in my diet. Nothing pointed to why the drugs helped my CFS.
Two months after the hospital visits my doc and I decided to give another round of antibiotics a whirl to see what happened. My CFS symptoms had slowly gotten worse since Christmas so what the heck. I took ten days worth of levofloxacin in pill form. Again I had significant improvement of my CFS symptoms. Due to holidays, doctor vacations and kid going back to work full time (no more taxi service for me) I couldn't get another round of antibiotics after this even though I wanted to try them again to see if I could improve further.
Now, somewhere along this timeline and of course I have no memory of when exactly my left knee started hurting. It blew up like a balloon and behaved as if I had been ice skating and weight lifting. I started to ice it daily. I had to be careful standing up since it occasionally wouldn't bear my weight. It hurt to go up and down stairs. I occasionally limped. My chiropractor tried adjusting it which only made it worse. Again this was another medical mystery, since I had been couch bound due to the UTI and moving even less than normal for me, there was NO reason that my knee would suddenly start hurting so badly.
Then I finally saw my CFS doc and he told me that Cipro and Levo can cause muscle and joint problems in some patients and he didn't want me taking it any more. So we came up with a plan to try Xifaxan instead, which I did three weeks ago. The whole thing was a cluster fuck disaster which I'll get into in another post.
Last Friday I came down with another raging UTI. Now these things take off fast in me due to my compromised immune system thanks to the CFS. Within 12 hours I go from "gee there is something wrong" to "get me some f'ing pain killers NOW". So I was back in the ER being pumped full of IV Cipro again. I'm now on Levofloxacin pills.
Two days ago I found this:
So HELLO knee pain. It is from the drugs.
However, upon reading the release from the FDA I decided to look into both Cipro and Levo more in depth. It turns out that this class of drugs can affect the central nervous system, brain and/or heart in some individuals. Could this be the reason my CFS symptoms improved??? These drugs are doing something to my brain, heart or CNS to make me more functional again? I mean I was swimming for cripes sake!! I walked several hundred feet with no crash afterwards! This a few months after being unable to make dinner most days. To me it was a miracle!
But now I face a decision: stay on the drugs and risk permanently injuring my left knee or continue to take them so that my CFS improves. Talk about being stuck between a rock and a hard place. I can't bring myself to talk to anyone about it and every day that I take one of these pills my knee gets worse. The pain never really went away since it first started in winter. Now I'm having to keep it bound to reduce the pain and swelling and so that I can walk on it. If I permanently injur it I may never skate again which would devastate me. But I want to get better from CFS. I can't stand being so sick I can't shower, cook, clean, walk, shop, read...
Crap.
Step forward five years to January of this year and the raging UTI that put me into the hospital. But what does this have to do with my left knee you ask? Bear with me... To cure this nasty infection, I had an IV of levofloxacin and was sent home with Cipro pills. A week later I was back in the hospital and this time had an IV of Cipro and was sent home with Bactrim pills. Not only did this get rid of my UTI but I made a huge recovery of function from my then severe CFS symptoms. This left the docs scratching their heads and me going for pee tests, poop tests and even SIBO tests. Of which, nothing showed up other than I needed more Bifida in my diet. Nothing pointed to why the drugs helped my CFS.
Two months after the hospital visits my doc and I decided to give another round of antibiotics a whirl to see what happened. My CFS symptoms had slowly gotten worse since Christmas so what the heck. I took ten days worth of levofloxacin in pill form. Again I had significant improvement of my CFS symptoms. Due to holidays, doctor vacations and kid going back to work full time (no more taxi service for me) I couldn't get another round of antibiotics after this even though I wanted to try them again to see if I could improve further.
Now, somewhere along this timeline and of course I have no memory of when exactly my left knee started hurting. It blew up like a balloon and behaved as if I had been ice skating and weight lifting. I started to ice it daily. I had to be careful standing up since it occasionally wouldn't bear my weight. It hurt to go up and down stairs. I occasionally limped. My chiropractor tried adjusting it which only made it worse. Again this was another medical mystery, since I had been couch bound due to the UTI and moving even less than normal for me, there was NO reason that my knee would suddenly start hurting so badly.
Then I finally saw my CFS doc and he told me that Cipro and Levo can cause muscle and joint problems in some patients and he didn't want me taking it any more. So we came up with a plan to try Xifaxan instead, which I did three weeks ago. The whole thing was a cluster fuck disaster which I'll get into in another post.
Last Friday I came down with another raging UTI. Now these things take off fast in me due to my compromised immune system thanks to the CFS. Within 12 hours I go from "gee there is something wrong" to "get me some f'ing pain killers NOW". So I was back in the ER being pumped full of IV Cipro again. I'm now on Levofloxacin pills.
Two days ago I found this:
Yes, this include Cipro and Levofloxacin along with a few other antibiotics I've never heard of.FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection
So HELLO knee pain. It is from the drugs.
However, upon reading the release from the FDA I decided to look into both Cipro and Levo more in depth. It turns out that this class of drugs can affect the central nervous system, brain and/or heart in some individuals. Could this be the reason my CFS symptoms improved??? These drugs are doing something to my brain, heart or CNS to make me more functional again? I mean I was swimming for cripes sake!! I walked several hundred feet with no crash afterwards! This a few months after being unable to make dinner most days. To me it was a miracle!
But now I face a decision: stay on the drugs and risk permanently injuring my left knee or continue to take them so that my CFS improves. Talk about being stuck between a rock and a hard place. I can't bring myself to talk to anyone about it and every day that I take one of these pills my knee gets worse. The pain never really went away since it first started in winter. Now I'm having to keep it bound to reduce the pain and swelling and so that I can walk on it. If I permanently injur it I may never skate again which would devastate me. But I want to get better from CFS. I can't stand being so sick I can't shower, cook, clean, walk, shop, read...
Crap.
Wednesday, July 3, 2013
Mr. Sun
Okay I'm not nuts. Well maybe a little but that is another story...
I've talked before about sunlight exposure helping me feel better. Prior to this evening I had no idea why this happened. I didn't know if it was a placebo effect but that didn't make sense since I didn't expect to feel better after being out in the sun. I just noticed that I did feel better after being out in the sun. I did several online searches and only came up with the idea that it might be related to the boost in vitamin D levels. However, taking supplements didn't have the same effect that going out in the sun did. So it was a mystery. Well not anymore. Here is a great TED talk that explains it a little bit. There is still more research to be done (when isn't there???).
http://on.ted.com/Weller
This has two links to CFS patients. Several studies have shown that we have reduced blood flow and this man has seen increased blood flow after exposure to UVA. Also, UVA exposure seems to affect the NO cycle in the skin cells. Well, there is also evidence that our NO/ONOO- cycle is on the fritz. So these are two possible explanations for why I feel better after sun exposure and they have NOTHING to do with vitamin D. So I feel a little less crazy-patient this evening. There is a legitimate explanation for why I feel better after doing some sun bathing. Now I just need a UVA lamp for winter so I can get my NO on.
I've talked before about sunlight exposure helping me feel better. Prior to this evening I had no idea why this happened. I didn't know if it was a placebo effect but that didn't make sense since I didn't expect to feel better after being out in the sun. I just noticed that I did feel better after being out in the sun. I did several online searches and only came up with the idea that it might be related to the boost in vitamin D levels. However, taking supplements didn't have the same effect that going out in the sun did. So it was a mystery. Well not anymore. Here is a great TED talk that explains it a little bit. There is still more research to be done (when isn't there???).
http://on.ted.com/Weller
This has two links to CFS patients. Several studies have shown that we have reduced blood flow and this man has seen increased blood flow after exposure to UVA. Also, UVA exposure seems to affect the NO cycle in the skin cells. Well, there is also evidence that our NO/ONOO- cycle is on the fritz. So these are two possible explanations for why I feel better after sun exposure and they have NOTHING to do with vitamin D. So I feel a little less crazy-patient this evening. There is a legitimate explanation for why I feel better after doing some sun bathing. Now I just need a UVA lamp for winter so I can get my NO on.
Wednesday, June 12, 2013
Waiting for Poo
No, that isn't a typo. I'm not waiting for Pooh bear. I sent in my poo to a lab two weeks ago and I still don't have the results back. My health is in decline again and I've had two weekends in a row where I've spent almost an entire day in bed feeling like absolute crap. You know, those days where I look like I'm asleep but I'm really awake but just can't move. Hubs keeps thinking I'll snap out of it if I just get some shuteye. HAH! Not a chance.
Anyway, back to the poo. My doc wants the poo test results before he'll give me more antibiotics. He wants to target the drug to what might be actually lurking in my guts. Good idea and I approve of the plan but I wish the lab would hurry up. I'm still doing better than December but the number of bad days are increasing. I'm doing less around the house but I'm still managing to walk short distances unaided first thing in the morning. The evenings are another story and my walker gets used way more often than I would like.
Of course my sleep is getting seriously wonky again and I'm not going to bed until 4, 5 or even 6am. That puts a serious dent in the activities for the day.
During my better moments this year I have managed to get a bit of cleaning done. I dusted down the walls in the kitchen. Cleaned out the pan cupboard. Moved the frozen meat to the new freezer in the garage. Dusted off the plastic plant in the bathroom. Gone through the kitchen cabinets and thrown out old food. Gone through the fridge and gotten rid of whatever the heck was growing in there. Some of it was beyond recognition. I live with two other people but they are guys and just don't get the idea that the fridge needs to be cleaned out regularly. Gross. So I'm pretty happy. I've gotten rid of the worst housekeeping catastrophes that were driving me batty. I would love to be well enough to tackle the dust bunnies in the bedroom but that will have to wait for another day. I never thought I would miss housecleaning or look forward to doing it.
Anyway, back to the poo. My doc wants the poo test results before he'll give me more antibiotics. He wants to target the drug to what might be actually lurking in my guts. Good idea and I approve of the plan but I wish the lab would hurry up. I'm still doing better than December but the number of bad days are increasing. I'm doing less around the house but I'm still managing to walk short distances unaided first thing in the morning. The evenings are another story and my walker gets used way more often than I would like.
Of course my sleep is getting seriously wonky again and I'm not going to bed until 4, 5 or even 6am. That puts a serious dent in the activities for the day.
During my better moments this year I have managed to get a bit of cleaning done. I dusted down the walls in the kitchen. Cleaned out the pan cupboard. Moved the frozen meat to the new freezer in the garage. Dusted off the plastic plant in the bathroom. Gone through the kitchen cabinets and thrown out old food. Gone through the fridge and gotten rid of whatever the heck was growing in there. Some of it was beyond recognition. I live with two other people but they are guys and just don't get the idea that the fridge needs to be cleaned out regularly. Gross. So I'm pretty happy. I've gotten rid of the worst housekeeping catastrophes that were driving me batty. I would love to be well enough to tackle the dust bunnies in the bedroom but that will have to wait for another day. I never thought I would miss housecleaning or look forward to doing it.
Tuesday, March 5, 2013
SIBO and CFS
Coincidentally (a little too coincident if you ask me) there has been quite a bit published in both the journals and in the patient forums regarding gut health and CFS lately.
A group in Australia has done poop transplants on CFS patients and had a 70% success rate (undefined in the free abstract) and a 53% extended remission rate (again undefined in the free abstract available).
Dr. Hornig has been looking into the gut/CFS connection as well. She has already discovered problems in the guts of autistic kids which would explain why the GAPS diet works for some of them.
A group in Australia has done poop transplants on CFS patients and had a 70% success rate (undefined in the free abstract) and a 53% extended remission rate (again undefined in the free abstract available).
The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy
Dr. Hornig has been looking into the gut/CFS connection as well. She has already discovered problems in the guts of autistic kids which would explain why the GAPS diet works for some of them.
Infection, Autoimmunity and PANDA’s: Dr. Hornig on Chronic Fatigue Syndrome at Dr. Klimas’ NSU Conference
There is also a study on guts health in CFS patients about to be published by Sanjay Shukla.
Here is Dr. Teitelbaum's take on CFS and SIBO.
Where am I going with all of this? Well I have continued my decline. I'm back to being on the couch unable to read, drive or even ride in the car short distances without having severe symptoms. The B12 shots and the Equalibrant aren't the cause of my miraculous recovery since I'm still taking them and I'm back to my shitty old self.
Today I got my test results back from Dr. Komaroff and a chronic bacterial infection is indicated by my blood work. He is suggesting I go to an infectious disease specialist. My treating CFS doc Dr. W. also thinks my miraculous recovery was due to bacterial infection of my guts. Then suddenly all this stuff shows up on the interwebs about SIBO. Coincidence!?! Weird if you ask me. So I've emailed my primary doc asking if he will send me to my infectious disease doc over at Tufts or just start treating me for SIBO. There are two treatments for it: 1) Xafaxin and/or 2) Paleo and/or GAPS diet. Another coincidence!?! I think I'll do both. I'll go on the Xafaxin since my insurance covers it and start GAPS. I had planned on doing GAPS about a year ago but was too sick to actually go through with it. If I can get a head start with the antibiotics then I'll be able to cook again and start with GAPS and end up on Paleo.
I'm groaning at this. I've been eating wheat products again because I've been craving them. My son and I sneak out the house while hubs is sleeping and go get roast beef sandwiches at 1am since we are both night owls. It has become a social ritual with us. We also go out for breakfast at two in the afternoon when we get up and go on random coffee runs. We have bonded over coffee and donuts. This all leads to toast, muffins, donuts and sandwiches. None of which I'll be able to eat on GAPS or Paleo. I won't be able to cheat for a long time. At least months if not a year or two. Since I am so limited in what I can do physically, food has become our social time. The time to get Mom out of the house for an hour or two. I will have to look hard for new rituals to replace these. Things we can do together where I won't be as tempted to eat cheat foods. Perhaps even stuff we can do together that doesn't involve food. If my head clears up we can always go for car rides together. He loves driving around.
I. Am. Dreading. The. Diet!!!! This is going to SUCK!!!
Wednesday, February 27, 2013
CFS Update
It has been a crazy month. I continued to get better. I was driving around town, reading for an entire half hour, cooking complicated meals, walking several hundred feet at a shot, cleaning the house and generally feeling pretty darn good. Like maybe this was finally over and I'm possibly going to get better. This is the best I've felt since Dec 2011. Then I ran out of methylB12. I went through methyl withdrawal which means I have to take large dose of potassium to stop the muscle pain. And of course I started dragging a bit. Kid and I went and picked up the new syringes of B12 and I took the next shot but it didn't have the same effect. In fact it was insanely painful. Too painful. I called the doc and arranged for an appointment to discuss alternatives.
So last week I had to drive to Cambridge to see my treating CFS doc regarding the shot. We decided to go back to the glutathione IVs and just have the B12 in the shot. This should reduce the pain considerably. Then kid and I drove around a bit and had some fun.
The next day we had to get up early and drive into Boston to see Dr. Komaroff, the world famous CFS doc. The appointment was uneventful. He gave me crap for drinking raw dairy, was happy with my improvements and didn't want to change my treatments since I seemed to be doing well with them.
Kid and I drove to my old neighborhood to see where I lived when I first came to this country. Yes, I'm an import from Britain. I found the old apartment which looks just the same as when I lived there 40+ years ago. The convenience store is still on the corner and open for business. My mum used to send me there to get bread and milk for her. My sister and I used to go down there for candy if we had an extra quarter. We tried to find my old school but I couldn't remember what street it was on and I had no idea if it was even still there.
Anyway, all this activity has made me crash pretty hard. I spend Saturday and Sunday on the couch resting. I've been falling asleep at odd hours and haven't settled back into a regular sleep schedule. I can't read at all. I can't drive. Today was the first day I managed to cook. I had my first glutathione IV yesterday in over a month. I had a mild panic attack in the car on the way there. I knew I needed to lie to get out of the car and lie down. I took a nap in the comfy chair during the IV. My new B12 syringes showed up today so I'll get a methyl shot tomorrow. I'm slowly recovering from the crash but it is going to be one of those slow recoveries.
I get the sense that whatever miraculous recovery that occurred after my hospital stay is slowly wearing off. I'm crossing my fingers that this isn't the case but I won't know for sure until I normalize after this crash. I need more patience. I am SO done with being sick!
So last week I had to drive to Cambridge to see my treating CFS doc regarding the shot. We decided to go back to the glutathione IVs and just have the B12 in the shot. This should reduce the pain considerably. Then kid and I drove around a bit and had some fun.
The next day we had to get up early and drive into Boston to see Dr. Komaroff, the world famous CFS doc. The appointment was uneventful. He gave me crap for drinking raw dairy, was happy with my improvements and didn't want to change my treatments since I seemed to be doing well with them.
Kid and I drove to my old neighborhood to see where I lived when I first came to this country. Yes, I'm an import from Britain. I found the old apartment which looks just the same as when I lived there 40+ years ago. The convenience store is still on the corner and open for business. My mum used to send me there to get bread and milk for her. My sister and I used to go down there for candy if we had an extra quarter. We tried to find my old school but I couldn't remember what street it was on and I had no idea if it was even still there.
Anyway, all this activity has made me crash pretty hard. I spend Saturday and Sunday on the couch resting. I've been falling asleep at odd hours and haven't settled back into a regular sleep schedule. I can't read at all. I can't drive. Today was the first day I managed to cook. I had my first glutathione IV yesterday in over a month. I had a mild panic attack in the car on the way there. I knew I needed to lie to get out of the car and lie down. I took a nap in the comfy chair during the IV. My new B12 syringes showed up today so I'll get a methyl shot tomorrow. I'm slowly recovering from the crash but it is going to be one of those slow recoveries.
I get the sense that whatever miraculous recovery that occurred after my hospital stay is slowly wearing off. I'm crossing my fingers that this isn't the case but I won't know for sure until I normalize after this crash. I need more patience. I am SO done with being sick!
Tuesday, February 5, 2013
Pain
I've now upped my dose of Equalibrant twice so I'm now taking four pills a day. The goal is six. I'm way more active in general and seem to be sleeping quite well without the use of sleep aids. I'm slowly becoming nocturnal again so the 8pm bedtime was rather short lived.
Only trouble with this rosy picture are persistent low grade headaches and constant low grade back pain. It is bad enough that it is irritating and to have to deal with it constantly for several weeks now is starting to get me down. Every move I make hurts. Every position I sit in hurts. I can NOT get comfortable. I'm starting to pop aspirin again and I have to be careful or I'll be taking it like candy which isn't good at all.
There are several possibilities of the source of the pain: a side effect of the Equalibrant, using muscles that aren't used to being used and/or fibro or a combination of any of these factors. For instance, I hung up all of my clothes that had been in a big pile in my bedroom. While hubs does do the laundry, he stinks at putting it away. I found my summer clothes at the bottom just to let you know how long this has been piling up. Anyway, I was folding and hanging clothes for two hours. Not constantly. I took several breaks and had a couple of lie downs but two and a half hours later I reemerged from the bedroom. Within a few hours, all the muscles in my upper back stiffened up, which lead to a mother of a headache that wrapped around to my jaw. This made me worried that a migraine was imminent. Turns out my muscles were just screaming at me. I'm sure the fibro kicked in and amped it up a few notches.
So I'm still figuring things out. I am starting to wonder if I should ease off the Equalibrant but I LOVE the energy it is giving me. I'm NOT crashing after exercising!!! Holy crap when is the last time THAT happened!?! Like 3 YEARS ago!!! I guess I'm going to have to add in PT or yoga or Tai Chi to my day to get my muscles working again and ratchet back the fibro a bit. I never expected to be saying that this soon!
Only trouble with this rosy picture are persistent low grade headaches and constant low grade back pain. It is bad enough that it is irritating and to have to deal with it constantly for several weeks now is starting to get me down. Every move I make hurts. Every position I sit in hurts. I can NOT get comfortable. I'm starting to pop aspirin again and I have to be careful or I'll be taking it like candy which isn't good at all.
There are several possibilities of the source of the pain: a side effect of the Equalibrant, using muscles that aren't used to being used and/or fibro or a combination of any of these factors. For instance, I hung up all of my clothes that had been in a big pile in my bedroom. While hubs does do the laundry, he stinks at putting it away. I found my summer clothes at the bottom just to let you know how long this has been piling up. Anyway, I was folding and hanging clothes for two hours. Not constantly. I took several breaks and had a couple of lie downs but two and a half hours later I reemerged from the bedroom. Within a few hours, all the muscles in my upper back stiffened up, which lead to a mother of a headache that wrapped around to my jaw. This made me worried that a migraine was imminent. Turns out my muscles were just screaming at me. I'm sure the fibro kicked in and amped it up a few notches.
So I'm still figuring things out. I am starting to wonder if I should ease off the Equalibrant but I LOVE the energy it is giving me. I'm NOT crashing after exercising!!! Holy crap when is the last time THAT happened!?! Like 3 YEARS ago!!! I guess I'm going to have to add in PT or yoga or Tai Chi to my day to get my muscles working again and ratchet back the fibro a bit. I never expected to be saying that this soon!
Monday, January 28, 2013
Status Update
One week on Equilibrant.
One month on Prozac.
One month on methylB12 and glutathione shots.
I have WAY more energy!! I'm doing stuff again! Like laundry and dishes. I'm walking short distances unassisted. I can tolerate car rides pretty well. I can read for about a half hour. I have periods when I can't sit still and have to get up and do something! Wow!! Even my recovery time is shorter and I don't seem to crash the next day after doing things. I'm SO excited!!
I'm in a good mood. I'm joking and singing. Hubs has noticed and finds it odd and slightly disturbing. He isn't used to me being happy. After all it has been three years of sick yuckies.
My sleep is slowly returning to the nocturnal hours. No more getting tired at 8pm. I was up until 4am yesterday and it is already 12:30pm and I'm still full of pee and vinegar. I started taking melatonin again to try and induce sleep. It didn't work last night but I'm sleeping more heavily on it so I'm going to keep taking a 1/4tab.
One month on Prozac.
One month on methylB12 and glutathione shots.
I have WAY more energy!! I'm doing stuff again! Like laundry and dishes. I'm walking short distances unassisted. I can tolerate car rides pretty well. I can read for about a half hour. I have periods when I can't sit still and have to get up and do something! Wow!! Even my recovery time is shorter and I don't seem to crash the next day after doing things. I'm SO excited!!
I'm in a good mood. I'm joking and singing. Hubs has noticed and finds it odd and slightly disturbing. He isn't used to me being happy. After all it has been three years of sick yuckies.
My sleep is slowly returning to the nocturnal hours. No more getting tired at 8pm. I was up until 4am yesterday and it is already 12:30pm and I'm still full of pee and vinegar. I started taking melatonin again to try and induce sleep. It didn't work last night but I'm sleeping more heavily on it so I'm going to keep taking a 1/4tab.
Sunday, January 20, 2013
Energy: My Long Lost Friend
Apart from my period bringing me to my knees yet again, I seem to be maintaining my new found energy levels. I've been cooking breakfast and dinner and even some extras. I've been driving around town again. I can read for about a half hour before brain fry sets in. I've been doing multiple activities in one day such as showering, making breakfast, going on an appointment and then making dinner. Holy Cow!! I'll be skating next!
So what happened?? As far as I can tell it was the antibiotics resetting my system. Once I stopped taking them I loaded up on probiotics both in pill form and food form. I have eaten little in the way of sugar or wheat products although I have been trying various gluten free breads this past month (most of which aren't agreeing with me so back to Paleo I go). My body seems to be doing best with lots of protein.
I do have two other things that might be contributing to this upswing:
I've transitioned from glutathione IVs to a glutathione shot combined with methyB12.
I also just started taking equlibriant. I heard about this from another CFS blogger who's doc put him on it and he saw some improvement. He then posted this video so I decided to give it a try. What the heck!?! I'm desperate and my docs have told me they can't do anything for me so I'm kinda on my own.
http://quixoticmeblog.blogspot.com/2013/01/video-interview-with-dr-chia-must-watch.html
So I continue on my experiment of N=1. Wish me luck!
So what happened?? As far as I can tell it was the antibiotics resetting my system. Once I stopped taking them I loaded up on probiotics both in pill form and food form. I have eaten little in the way of sugar or wheat products although I have been trying various gluten free breads this past month (most of which aren't agreeing with me so back to Paleo I go). My body seems to be doing best with lots of protein.
I do have two other things that might be contributing to this upswing:
I've transitioned from glutathione IVs to a glutathione shot combined with methyB12.
I also just started taking equlibriant. I heard about this from another CFS blogger who's doc put him on it and he saw some improvement. He then posted this video so I decided to give it a try. What the heck!?! I'm desperate and my docs have told me they can't do anything for me so I'm kinda on my own.
http://quixoticmeblog.blogspot.com/2013/01/video-interview-with-dr-chia-must-watch.html
So I continue on my experiment of N=1. Wish me luck!
Tuesday, January 8, 2013
Holiday Craziness
Since my last post I've been in the ER twice and had a killer migraine headache. Hence the lack of posts here.
The ER visits were the result of a UTI that took off within six hours of onset to feeling like someone was holding a blow torch to my genitals. OMFG talk about painful. Of course one visit wasn't enough and after being in Friday day I had to go back Christmas evening. A combination of not enough food, not enough water and an infection that was doing its best to take over my body. Cipro is one nasty ass drug.
A result of being on killer antibiotics for two weeks is that it purged my system of every bacteria known to man and then some. Once the infection cleared up I felt GREAT! Better than I have in months. Since I had a clean gut I decided to repopulate it with good bacteria so I've been eating fermented beets, sauerkraut, sourdough bread, yogurt, fermented cod liver oil, and massive probiotic pills. I have also kept grains and sugars out of my diet as much as possible so I'm not feeding the bad bugs. The cool thing about starting with a clean gut is that there was no die off reaction to the large doses of probiotics. Woohoo!
I have energy. My head is clear. I'm reading again. I want to exercise. I'm in a great mood. My sleep has reset and I now have no trouble falling asleep in the late evening and getting up in the early morning without having to take melatonin or trazadone!
Of course there are a few other confounding factors to my new found health: I started glutathione shots (long story for another post) instead of my IVs, the shots include a dose of B12 and I started a pediatric dose of prozac.
Whatever is going on I'm happy about it. I feel like I can take on the world for a change. Don't get me wrong CFS is still there lurking in the background. I still have to rest after each exertion. I still can't walk down my own street but I'm feeling better than I have since last winter. Whatever it is I'll take it!
The ER visits were the result of a UTI that took off within six hours of onset to feeling like someone was holding a blow torch to my genitals. OMFG talk about painful. Of course one visit wasn't enough and after being in Friday day I had to go back Christmas evening. A combination of not enough food, not enough water and an infection that was doing its best to take over my body. Cipro is one nasty ass drug.
A result of being on killer antibiotics for two weeks is that it purged my system of every bacteria known to man and then some. Once the infection cleared up I felt GREAT! Better than I have in months. Since I had a clean gut I decided to repopulate it with good bacteria so I've been eating fermented beets, sauerkraut, sourdough bread, yogurt, fermented cod liver oil, and massive probiotic pills. I have also kept grains and sugars out of my diet as much as possible so I'm not feeding the bad bugs. The cool thing about starting with a clean gut is that there was no die off reaction to the large doses of probiotics. Woohoo!
I have energy. My head is clear. I'm reading again. I want to exercise. I'm in a great mood. My sleep has reset and I now have no trouble falling asleep in the late evening and getting up in the early morning without having to take melatonin or trazadone!
Of course there are a few other confounding factors to my new found health: I started glutathione shots (long story for another post) instead of my IVs, the shots include a dose of B12 and I started a pediatric dose of prozac.
Whatever is going on I'm happy about it. I feel like I can take on the world for a change. Don't get me wrong CFS is still there lurking in the background. I still have to rest after each exertion. I still can't walk down my own street but I'm feeling better than I have since last winter. Whatever it is I'll take it!
Subscribe to:
Posts (Atom)