My friend Laurel's video!!
Tuesday, November 24, 2009
Lyme theory update
Sunday, November 22, 2009
Christmas cards!!
Thursday, November 19, 2009
A quick Thank you!!
Wednesday, November 18, 2009
Treatments Galore.......
Monday, November 9, 2009
The smaller things in life!!
Hey People,
Last week was by far my best week since early September. Dare I even goes as far as to say I encountered a few moments of ecstasy… Perhaps we can thank our illness for these little moments?? Like so many of you, I have spent the last few weeks feeling like I was being beaten up from inside on a daily basis. This beating attacks the mind, body & soul, slowly depleting any spark that exists… When you are chronically ill there is a desire to latch on to the positive in order to try and fit in to normal life. But this positivity is most of the time an act and can take an enormous amount of energy too.
So before the ecstasy, I better rewind a bit…. I haven’t talked about my doxycycline treatment much as I don’t really know what to make of it yet. I am in week six of a six weeks course. I was starting to feel unwell the week before I had started and continued to go down hill after starting. However, the pattern wasn’t really different to my usual pattern of deterioration. There are a few things that have stood out though. I was definitely more tired than usual in the first couple of weeks. I also had extreme chills internally all day, especially in the chest area for the first two weeks.
In week three I had a lot of internal anxiety that felt unusual and very unpleasant. I occasionally suffer from uptightness and pain in my jaw. This was constant through week 3 and very unpleasant and painful, nearly locking at times. I looked back at my notes for August which was a terrible month for me, and I feel that my symptoms were a little less unpleasant, especially my fluey/poison feeling which I had noted as “debilitating” as opposed to “moderate” this time.
Week three and four were the worst with very bad joint and general body pain, nausea, very bad sleep, anxiety, fatigue, brain fog, etc… In week five my joint pain pretty suddenly disappeared along with the anxiety, nausea and very bad sleep. Aaahhhhhhhhhh….. and back to those delicious moments of ecstasy!! With that battle over, it can only be expected that one would take extreme pleasure in the small things in life. I was able to do my course three mornings a week for two hours, and the creative juices were A flowing…This feeling has always given me a real high. Then last week I had a couple of small walks when I couldn’t take the smile of my face, basking in all the autumn beauty around me. I also enjoyed spending some time with family. Yes all of these things are small and these are things I try and do when feeling crappy too. But to do these things and feel ‘relatively normal’ is nothing short of exhilarating!!!! No acting needed. This was all real : )
What goes up must come down unfortunately. After about four days of delight I began to get a sore throat. This has continually got worse over the last five days, leaving me quite fatigued again, with sore lymph nodes in my neck, armpits, breasts and groin. My neck and armpit nodes are swollen. I’m sure this is something viral?????
Last week I really enjoyed those moments of ‘freedom’ and I do have this illness to thank for helping me enjoy the smaller things in life!
So here’s to enjoying all those smaller things that life has to offer us!!
I hope you’re all well.
Treya : )
Thursday, October 29, 2009
Living the Cinderella Life..................
Ah yes People, Living life against the clock! Isn’t this what everyone has to do in life anyway? I guess this is very true. However, windows of opportunity to do things are much smaller when living with ME/CFS. I have discussed before my wariness of making plans due to the frustration that arises through not fulfilling those plans.
One becomes a slave to this illness. Serving it’s every need, and usually being punished if these duties aren’t met appropriately. But I don’t want to be a slave to this illness for any longer than I have to. This is easier said then done on many levels. When one is a slave, one isn’t in control. You have to learn to put your body’s needs first, which isn’t always easy.
I had mentioned that I wanted to work on my course a few days a week and do some other things. This is where the small, and I mean usually very small windows of opportunity come in. The thing that you learn with this illness is that all the things that you took for granted before, like showering, or clothes washing, etc… must go into these windows of opportunities too.
So on a good day I need to rest several times a day to prevent being “punished”. These rests take up time. An example of one of these days is study for three hours, plus allocated rests, plus showering, making lunch/dinner equals day over. Another example might be if I am to meet a family member for a couple of hours. This would usually require making breakfast, showering, drying hair, trying to get a rest in before meeting… Returning from being out usually results in being flat out for the rest of the day.
When things aren’t so good you can say goodbye to any of the extras. Making a trip to the local shop for something for lunch may be it and then you are probably to wrecked to make lunch anyway. No time for the course, writing posts, etc… Just enough time for our basic needs, if even? Also to get things like my course done, I let things like house cleaning slip and clothes washing. Obviously this gets to a point when it has to be done and because everything cannot be done in one day when you are unwell, this usually takes up a few days, so no course that week. So you get my drift here…
There are many things that call the slave into action. A sleepless night, debilitating nausea/flu feeling, pain, fatigue, neurological issues (concentration). Many outsiders don’t realize that we are slaves. They get to see us all done up and ready to go to the “ball”…
So what the hell am I saying here????? Oh yeah. This is not something that you get used to. It is incredibly frustrating to be a slave, putting all the masters needs before your own. I haven’t been able to do my course this week or any house cleaning, etc..
I am ambitious and I certainly have always liked to achieve the goals I set out to do. Not being able to do these things usually results in mental frustration. This is in itself is a goal to try and get over, as it is not healthy for the body to be getting stressed in the head about these things. So even giving in is an ongoing struggle for me. This illness is seriously multifaceted, challenging and relentless on an ongoing basis.
Yes people…. That’s all I wanted to say for now, even though it’s not as coherent as I would have liked. But hey, you got to learn to let go, right….
Go Team Cinderella!!!!!!!!
Hope you’re all keeping well…
Treya : )
Tuesday, October 20, 2009
Adrenal Stress Profile
The original, life-saving role of the adrenal glands
"To understand how adrenal fatigue develops, it is important to understand the original, evolutionary function of the adrenal glands. The adrenals are walnut-sized glands located on top of each kidney, and are important control centers for many of the body’s hormones. The outer layer of the gland, called the adrenal cortex, produces hormones including cortisol, DHEA, estrogen and testosterone. The centers of the glands produce adrenaline, the hormone named after them.
The basic task of your adrenal glands is to rush all your body’s resources into "fight or flight" mode by increasing production of adrenaline and other hormones. When healthy, your adrenals can instantly increase your heart rate and blood pressure, release your energy stores for immediate use, slow your digestion and other secondary functions, and sharpen your senses.
Let’s emphasize two points about this healthy stress response. First, it takes priority over all other metabolic functions. Second, it wasn’t designed to last very long".
Adrenal fatigue, Women to Women,
http://www.womentowomen.com/adrenalfatigue/effectsofhighcortisol.aspx#healthyadrenals
"A chronic imbalance between adrenal stimulation and cortisol and/or DHEA output is associated with a multitude of both clinical and subclinical systemic disorders. Chronically depressed DHEA output results in an imbalance in sex hormones. Abnormal cortisol and/or DHEA values (either elevated or depressed) result in a decrease in the activity of the immunocytes that produce secretory IgA (sIgA). SIgA provides a mucosal first-line immune defense against virtually every pathogen, including parasites, protozoa, yeasts, fungi, bacteria, and viruses. SIgA also provides a normal immune response to regularly encountered food proteins. Dysfunctional mucosal immunity is associated with an increased risk of infections and of adverse food reactions".
"In the presence of stressors, the body almost immediately attempts to increase cortisol levels. This increase is associated with both endocrine and autonomic responses in preparing the body to defend itself normally. However, elevated cortisol levels for extended periods negatively affect virtually every aspect of physiology. For example, it becomes more difficult to maintain proper blood sugar levels; to slow down for rest, recovery, and repair; to get good quality sleep; to balance other hormones; to maintain mucosal immune integrity; to maintain bone mass, to produce effective general immune function; to effectively regulate inflammatory processes; or to detoxify the body. Without proper intervention, continued high adrenal stimulation can lead to adrenal exhaustion and lowered cortisol levels. Eventually adrenal or cardiac failure can occur".
"Cortisol, which is best known for stimulating gluconeogenesis, is essential for normal glycogenolysis. Cortisol affects the heart, vasculature, blood pressure, water excretion, and electrolyte balance. It mobilizes protein stores in all tissues except the liver; it mobilizes fatty acids from adipose; it is the precursor of cortisone and acts as an anti-inflammatory; and it is the primary hormone directing immune function. Cortisol can stimulate or inhibit gene transcription, promote apoptosis, and affect bone metabolism and calcium dynamics. It affects behavior, mood, neural activity, and a variety of central nervous system biochemical processes. Cortisol affects the eyes, gastrointestinal tract, reproductive function, and the production and clearance of other classes of hormones. It is a major marker of the complex control loops regulating the sex hormones. The general effect of excess cortisol is usually stimulatory and catabolic; a deficiency of cortisol usually results in a slowing of physiology".
"Clinical Use
The degree and timing of cortisol imbalances provide the healthcare professional with valuable insights into the nature of causative stressors, and allow the practitioner to formulate remedial protocols. Readily identifiable inducers of increased adrenal stimulation include stressors such as tissue damage, inflammation, pain, and mental or emotional stress. Other significant physiological stressors can be subclinical, and include intolerance to the gliadin fraction of gluten protein, lactose or sucrose intolerance, glycemic dysregulation, delayed food sensitivity, and infection with viruses, bacteria parasites and/or other pathogens. Additional testing may be necessary to rule out the possibility of these and other factors interfering with digestion and absorption and creating inflammation and stress on adrenal glands. These types of problems could impede absorption and assimilation of essential nutrients, and the maintenance of normal blood sugar. Chronic dysfunction of any of these processes is a sufficient cause of adrenal exhaustion. Physiological pathways, organs, or systems identified as being the major cause of some other disorder may concurrently serve as causative agents in adrenal exhaustion. In most cases, regardless of the priority given to another pathway, organ, or system as being dysfunctional--and virtually regardless of the condition identified--adrenal exhaustion resulting from excessive stress must be addressed and rectified in order to restore normal physiology or function".
Biohealth Diagnostics
http://www.biodia.com/testing/test201_adrenal_stress_profile.html
Here is where I ordered my home kit from at the request of my doctor.
You pay and get the results sent to your doctor.
My Test Results
Above is my cortisol levels - Three of them are out of normal range and one is within normal range. The second one which was about 11 am was within normal range. Here is what they had to say about my levels;
" The morning cortisol (7am) is above the normal range. This may be a reflection of low night time blood sugar levels, insomnia, chronic pain, inflammation, glycogen storage impairment or an imbalance in the hypothalmic adrenal axis.
The afternoon cortisol (3pm) is above the normal range. This may be indicative of blood glucose counter rehulation process or stress Action: Keep blood sugar levels stable.
The midnight cortisol level is above normal range. This may be suggestive of malfunctioning of the hypothalmic adrenal axis feedback system. This is associated with REM sleep disruptions and depression".
They said there was no deviations in DHEA production.
So this certainly explains some of my sleep problems. My doc said that I am stuck in "Fight or Flight" response. Maybe I haven't been resting as much as I should be. As for outside stress - well, I don't get stressed very often, but when I do it's usually over money or non-sufferers reactions to ME/CFS. My doc said there is a lot of physiological stress, like toxicity, viruses, etc... So I am going to have to try to detox more. He suggested I buy an Infra-red home sauna, which I will look into when I can afford it. This also explains why I have no tolerance for stress and when I do get stressed why I loose control and can't seem to calm down for hours. He has also put me on Neuro - PS, before lunch and dinner.
In relation to keeping the blood sugar level up, I have been reading a bit about that;
First and foremost: timing your meals and snacks
"One thing I often tell my patients is to never allow themselves to get too hungry. Low blood sugar by itself puts stress on your body and can tax your adrenals. You may not realize that your body is in constant need of energy — even as you sleep. And the primary adrenal hormone cortisol serves as a kind of moderator in making sure your blood sugar between meals, especially during the night, stays adequate. It does this by signaling to the liver to release its stored sugar, glycogen, when there isn’t food on board. Long periods without food make the adrenals work harder by requiring them to release more cortisol to keep your body functioning normally. So eating three nutritious meals and two to three snacks that are well-timed throughout the day is one way to balance your blood sugar and lessen the adrenal burden".
"Here are some other simple ways to gently support your body’s natural cortisol cycle:
If possible, eat breakfast by 8:00 AM or within an hour of getting up (earlier is better), to restore blood sugar levels after using glycogen stores at night.
Try to eat lunch between 11:00 AM and 12:00 noon. Your morning meal can be used up quickly.
Eat a nutritious snack between 2:00 and 3:00 PM to get you through the natural dip in cortisol around 3:00 or 4:00 in the afternoon.
Make an effort to eat dinner around 5:00 or 6:00 PM, and make this your lightest meal of the day".
Adrenal fatigue, Women to Women,
http://www.womentowomen.com/adrenalfatigue/effectsofhighcortisol.aspx#healthyadrenals
So that's it for now people. I will be trying my best to get my cortisol levels down...
I hope you're all well...
Treya : )
Saturday, October 17, 2009
Award...
Q & A on XMRV - New York Times
You make a good point. This is one study, the results needs to be validated, then the next study will look at treatment options. And you are right, some retroviruses are seemingly benign, whereas others are pathogens.
But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.
Despite these limitations, there has been considerable effort to understand the cause and develop effective treatments. The Whittemore Peterson Institute should be congratulated for its outstanding work, performed in a brand new center paid for with private donations, state money and N.I.H. collaboration. Creative research and creative financing!
October 15, 2009 Readers Ask: A Virus Linked to Chronic Fatigue Syndrome
The New York Times
To read all the questions and answers in full, Click here
I hope you're all keeping well.
Treya : )
Saturday, October 10, 2009
BIG research news for ME/CFS!!!!!
Researchers Discover Retroviral Link to Chronic Fatigue SyndromeThis is exciting news for all of us, with a possibility of proper diagnosis and treatment in the future.Please click on links below to read in full.
Scientific American
The New York Times
National Cancer Institute
It's good to see some more steps in the right direction, hopefully...
Treya : )







