My friend Laurel's video!!

Below is a video made by my friend Laurel who has severe ME/CFS. We met online through blogging. She made this video for the CFS Advisory committee in America that meets every six months to decide how much funding is to be put into ME/CFS research and treatment. Unfortunately people who have severe ME/CFS never get their voice heard, which means that many people are unaware of how devastating this illness can be.

Laurel made this video to be shown when the committee meet next with the hope that ME/CFS be taken more seriously. Laurel is a true inspiration!!


Click the left video for the one with a voice over. 

Living with severe ME/CFS

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Tuesday, November 24, 2009

Lyme theory update

Hey People,

I had my appointment with my tropical specialist on Monday. He feels that I don't have Lyme. He said that I don't seem to have had a positive reaction to the treatment, which is what he would have expected. Instead he said a lot of my symptoms persisted throughout with some intensifying. Due to this he is closing the door on the Lyme theory. He did say we could try some more treatment at a higher dose for a while, but didn't really see the point. All of this kind of threw me as I felt all the strong reactions I was having, was possibly herxing... He dismissed this and said he would have expected me to be worse at the beginning and then improve and that most people improve after 2 weeks. I asked him if he thought this would be the case if even someone had it for four years... His answer was yes.

As you can imagine this all left me very confused. I respect the mans opinion and he was nice to me. So, I didn't even push for more treatment as I felt if he was falling on that side of the fence it is not worth it. He says there is nothing more he can do for me. I felt overwhelmed with confusion after. Of course I might not have Lyme. However, that little voice is still niggling inside me. I just don't think it should be dismissed so easily. Why was I reacting so strongly to the antibiotics? Although I felt at times my symptoms were a little less unpleasant, they were more constant.... I also felt very ill on the flagyl, especially the second night when I woke up feeling VERY ill, as if something nasty was pumping around my body and I was jerking all over the place and felt very fluey and as if my body was swollen???? 

I guess all the above could be due to the possible toxic effects of the antibiotics and maybe my body was just sensitive to this??? I have been getting mild rashes on my face and the palms of my hands. It is all blotchy red and white, kinda like corn beef... Strange... I will be keeping an eye on this. Anyway, I have made a decision. I am not going to take any more antibiotics for now, as I'm sick of the whole guessing game thing. I've been consistently sick for 8 weeks now except about four days here and there. I want to try and enjoy Christmas and my 30th Birthday in early January. I am definitely going to order a full Lyme panel test kit and co-infections test kit from Igenex in the US. If the results all come back clear then I am going to close the door on my Lyme theory for good. I feel the test is the easiest and the least stressful next step on me. 

I'm off the doxi just over a week and unfortunately my back rash, which had really cleared up is coming back and getting itchy again... I will leave this issue for a while. I am really sick of my sleep problems. I suffer from bad insomnia and disturbed sleep. I have been on Melatonin and 5HTP supplements for a year, which help a bit some times. But they are no helping nearly enough and I am sick of it. There is some serious imbalances in my brain as far as I can tell. I am never going to improve if I am not sleeping well. I have been trying to hold off on taking low dose anti-depressants for this. I was on them a few years ago and they helped. I am going to be going to my Doctor on Thursday and discuss going back on them. Something has to give... I am really worn out and can't seem to see a gap in the clouds. I haven't really improved overall over the last year and some of my symptoms are getting worse. I would imagine an anti-depressant will definitely help with some of my problems.

So that's all my news for now.

I hope you're all well...

Treya  :  )

Sunday, November 22, 2009

Christmas cards!!

Is anyone interested in buying Christmas cards, with the proceedings going to ME/CFS research??

If so, you can find a variety of packets on the  'Irish ME/CFS Association' website, at great value...

Thursday, November 19, 2009

A quick Thank you!!

I would just like to say a big THANK YOU to everyone who has voted for me so far!!!

Treya   xxxx

: )

Wednesday, November 18, 2009

Treatments Galore.......

Hey People,

I had my gynecological procedure yesterday. It is called a Lletz procedure, to remove the lesion that was found on my smear test. Everything went fine. I have not had any drastic effects from the anesthetic. I am feeling very tired, but that is probably due to the long day I had yesterday too. The doctor put me on a very strong dose of antibiotics called Flagyl for 5 days. I looked these up and coincidentally they are actually used to treat Lyme disease as well. I know it's only 5 days, but I will be interested to see how I react to them as it is two tabs a day at 400mg each. I finished my doxycycline treatment on Monday. I am back with the tropical disease specialist next Monday to reasses the situation... I will be pushing to go back on doxycycline at a higher dose for a while. But you never know what will happen once I enter the "Headmasters office", as I like to refer to it. I have been looking into prices for Igenex testing kits being sent over from the US and CD57 from Germany and lots of other tests, which I will also discuss with him. But we shall wait and see what the vibe is next week...

My spirits are good at the moment. I'm still finding it difficult to maintain any kind of routine. At present I am managing to do my course every second week, which is frustrating me, as it's hard to make any significant progress at such a snails pace.

So this is just a short post. I'm pretty tired... As I said, all is good in Treya land at present!!

I hope you're all keeping well...

Talk soon.

Treya  : )


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


Hey People,

I've recently had my second adrenal stress profile test done. So I would like to talk a little bit about the adrenal gland and my results. The purpose of the Adrenal Stress profile is to determine how stress has been taxing your body (adrenal glands). The best way to measure stress and how well our adrenal glands are functioning is with a 24 hour saliva test that measures cortisol, DHEA and insulin levels.

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...

Hey People,

I have decided to enter the 'Health Blogger Awards'. 

Sure why not, ey..... There's noting to loose. Anyway, if anyone would like to vote for me (and I mean only if you would like), please do so by clicking on the vote badge in the top right hand column.

Thanks either way!!

Treya  :  )

Q & A on XMRV - New York Times

Hey People,

I've been a bit all over the place this week, so I haven't been able to write a post.

The New York Times did a Questions & Answers article from their readers to a top American Researcher in response to the news on the XMRV virus. Dr. Nancy G. Klimas is a director of the department of immunology of the University of Miami School of Medicine and she works with Aids/HIV and Chronic Fatigue syndrome.

One of the questions that I found interesting was someone suggesting that at present it should not be likened to HIV as there is still not enough known about it and this could cause unnecessary panic...

Dr. Kilmas Response was,

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

Saturday, October 10, 2009

BIG research news for ME/CFS!!!!!

Researchers Discover Retroviral Link to Chronic Fatigue Syndrome
This 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  :  )