Sundog –noun 1. parhelion. 2. a small or incomplete rainbow.

Posts tagged “XMRV

Happy Birthday Sundog Tales!

As the title implies, today is the one year anniversary of this blog. I’ve spent the last few days trying to decide what type of post to write for marking such a momentous occasion. I could write a review of the changes, or lack there of in many cases, seen in the last year. It could be a more typical post written about the changes Fall is bringing to the woods around me as the very landscape itself is drastically altered in an unusually brief period of time this year.

But instead I have opted for a different sort of post.

Life in the Woods:

Each day I am awakened by nature. This is much different than the life I had known the majority of my previous years. Where once there was an annoying alarm clock to call me back from dreamland and into a world of deadlines, traffic, and various social responsibilities; now there are even more annoying squirrels to jolt me from my slumber, though the world they bring me to is much kinder than that of their electronic brethren.

I have spent a lot of time contemplating this odd life of mine, for make no mistake, choosing to live in a tent year round in the Pacific Northwest is an odd and difficult lifestyle. Sometime I am very angry at how things have occurred and the small role I played in my situation developing to its current state of dysfunction. Despite the difficulties of multiple infections causing a downturn in health the last six months, those times are mostly eclipsed by how often I find myself enjoying life and where it is leading me this last year,

Overall there is this growing sense that my path was never to be an average American woman. Rather, it seems to be unfolding into something much forgotten and ignored in the high pace of today’s society, guided by a deeper connection to nature and all that thrives around me. The trials of pain, loss, and hardship I survived have brought me here, and I am a much more liberated woman now than I was ten years ago as a fiery, young activist.

I find it very freeing to be without the boundaries set by our modern society. I am coming to understand that some of these boundaries and walls are surprisingly insubstantial once you open your mind to being allowed to do something different.

Our society has made me feel less than a whole human being, less than someone who is considered a contributor with earned money as the only valuation means, and because of the label for my illness I am less in need of cures than someone with a more impressive label – such as cancer or AIDs, yet many have offered comparisons showing my labels are just as debilitating.

I am here to say I am not LESS, I am MORE!

I am more aware of the small wonders in life than your average person who takes for granted all the ease they have in each day. The warm home, hot shower each morning, clean clothing with minimal effort, and the simple ability of not having to question everything they come into contact with to find out if it is friend of foe to their body. My life has slowed down as the world I live in is timed by seasons, not calendars. This slower pace allows time to stop and enjoy a cool breeze on my face or a stray sunbeam through the trees.

I am also very aware of the changing seasons and how it affects the birds, making the young ones born this year very nervous because their world is seemingly dying around them while they are helpless to change it. “Wait until spring,” I keep telling them, “it will be alright again.” I watch all the animals and plants around me, each one miraculous in its ability to have adapted to be exactly what it is today – a harmonious part of a self perpetuating cycle of life.

And I am more because I am learning to slip the knots that society has tied around me, trapping my soul to this damaged body; always telling me that to be deeply ill is to be sad, silent, and unfulfilled.

There is a growing awareness that I have a unique opportunity to step out of the box I was born into; the box my culture built for me based on ideals and beliefs so easily conformed to. Born again out of the fires of extreme illness and hardship, I am now free to explore life from a new perspective – one of my own creation. Even though physical healing has been very little this last year – emotional, mental, and spiritual healing has progressed by leaps and bounds.

And so as I continue to explore what it means to be Lisa now, instead of living in who Lisa used to be, I will not be posting as regularly to Sundog Tales.

This blog has helped me grow beyond need of it. The people who have posted comments to it have helped give me confidence and a new sense of community, two things which have been seriously lacking as illness put chasms of distance between myself, and my relatives and friends. I will still post updates and the occasional interesting bit of life that comes from living outdoors, but it is time I turn my energies elsewhere for now.

Thank you to everyone who has made Sundog Tales mean so much to me. Lisa

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Another Trip to the Wizard

Yesterday was this year’s trip to see our MCS/CFS specialist who’s office is about two hours away. (For last year’s trip see Back from the Wizard) The weather couldn’t have been better as it was one of our warmer days and lots of sunshine. A good day for a road trip!

A month ago Jeremy and I had our usual 10 vials of blood drawn each. It was a bit rougher trip than normal as we had forgotten to fast prior to the blood draw and opted to go home and wait another six hours before heading back in for the draw.

That day was a highlight of the blood sugar improvements we have seen since starting a paleo diet as eight hours total without a meal was rough, but very doable. A year ago this would not have even been considered possible.

Yesterday we received the results of those blood tests, covered our next stage of treatment, addressed my still lingering sinus infection, and tweaked a few things with our current treatment.

This is a very long, detailed post. Listed below is the quick version and all test results are at Test Results – Jeremy and Test Results – Lisa (or just go to top of my blog page for the tabs). Last year’s test results will be added there too for anyone who wants to compare them to this year.

Quick list of all changes:
– New antibiotic for sinus infection (possibly some acetylcysteine to nebulize too).
– Increase our b12, methylfolate, and milk thistle (detox herb).
– Start supplementing Vitamin K2.
– Keep Vitamin D the same for next six months and then retest.
– Take MTHF test.
– Jeremy increases his testosterone 50-100% and taurine.
– I begin supplementing thyroid, glycine, arginine, and methionine.

With a good amount of luck and hope, we should be seeing some improvements in our health soon. I only wish there was more to follow up with on Jeremy right now, but possibly time will shine more light on what needs healing for him too.

Sinus Infection
First thing we talked about, my recurring sinus infection. A couple weeks ago I noticed it coming back and restarted the same antibiotic as treatment. After two weeks, it briefly saw some improvement but is beginning to slowly worsen again. I will be starting a different antibiotic (also nebulized) early next week when it arrives in the mail from a compounding pharmacy in California. It should be noted that the first course of antibiotic treatment likely would have fully taken care of the sinus infection but some misread instructions led to it not being used properly. I suspect this new antibiotic will work very well.

Detox
We discussed how the treatments outlined at our last office visit had gone. He had suggested last October that we try a product to help promote detoxing but it had proved to strong even at 1/20th of a dose. Because of this, we are going to be trying an increase in an herb that has been helping us to detox instead.

Last year the plan had been to try the detox product and if it did not help much, then we would do a test panel which would help pinpoint where we are having trouble detoxing. However after looking over the current supplements we are using and our lifestyle (high avoidance of toxic triggers and really good diet) we all agreed that running such a panel would not likely require us to change much with our healing program even were it to be very informative.

I’ve mentioned before how much I love my doctor – him being ok with not running a test that would be out of pocket costs for us simply because he recognizes it would only give information but not change our treatment program is another big reason he’s such a great physician. I have not heard of very many doctors who are open enough to the needs of the patient to recognize saving money as one of those big needs.

MTHF
We will be running an insurance covered test of our MTHF process to see if it is working properly. This is the process by which methylfolate is used in the body for many important functions and if it is wonky can cause detox problems as well as a host of other symptoms. Meanwhile, we will slowly begin to increase our methylfolate supplementation.

Hydroxocobalamin shots (B12)
Starting with our b12 shot yesterday, we will be increasing each one by 50% – from 10,000 mcg each shot up to 15,000. I think I noticed a very large difference with the increase last night. A lot of energy after our trip instead of being totally wrung out as expected. It will take a few shots to see how well this works, but I suspect it is a very good change.

Vitamin K
One new blood test this time was to check our osteocalcin levels, aka Vitamin K. With the amount of Vitamin D we are supplementing with it is important to have enough Vitamin K to help ensure calcium is utilized properly in the body and not deposited in muscle or other tissues. Good catch by Dr. Buscher with this test as our results show we both are in need of supplementing Vitamin K. This was a little surprising actually as there should be ample K in our diet due to the amount of greens we eat which is why most doctors would not have bothered to test it. I tested below minimum and Jeremy right at minimum levels.

Vitamin D
We retested our Vitamin D levels again this year. They have both come up by a large amount to land us in the mid-normal range instead of the very low (Jeremy) to below minimum (me) that they tested at last year. Even so, we will still be on our current dosage of Vitamin D until they raise up into the range Dr. Buscher has found to be more optimal. This will be retested in six months as it is entering a more fine tuning area of supplementing.

Sex Hormones
Another test of our hormones this year showed some positive improvements for both of us. Jeremy is still too low on testosterone but he did see a 30% increase in levels. He will be having his supplemental testosterone raised to help further. Its a sticky situation to take supplemental testosterone as its one of those things you will be on the rest of your life once you start it. I did bring this up as a concern with increasing his dosage, but we all agreed that with how low his is, the time for options to raise it without medication have passed.

I saw positive improvement for my progesterone levels which had been fairly low last year. Though I’m now mid-range and could conceivably cease supplementing with progesterone drops, I’ll be continuing on them as there is still signs that they are needed.

As a side note – though we have been supplementing with hormones for the last 11 months, I also think our diet change has contributed to the improvements. Certainly removing phytoestrogens from the diet (soy) would be of tremendous help when trying to rebalance hormones.

Thyroid and DHEA
Next up is our thyroid and DHEA panels. Jeremy saw little or no change with both of these, however for me they both decreased over the last year. While last year there was the option of not addressing the thyroid because it was in the low normal range, this year it was pretty much only a question of what I would be supplementing it with. I had dropped another 27 points this year which lands me at 247. The reference range is 230-420 and very often people experience symptoms of low thyroid (hypothyroidism) when in the low normal range. I’d say I am now low, low normal.

When I was 15, I became ill and the doctor could not find the cause. After a specialist ran a lot of tests (enough blood drawn as to make me nearly pass out), he decided to take a chance and treat me for hypothyroidism despite me being in the low normal range. It worked almost immediately. A few years later I was able to cease thyroid medication but always kept in mind that I’m one of those who can have devastating symptoms as a low normal.

Last year I tried supplementing with Synthroid to see if it helped some of my symptoms but it had a huge, not good reaction in me. This year I will be trying the natural thyroid supplement, Armour, as it has recently come back on the market. It has a lot of negative reviews for it with the new formulation, but I have read many are able to crush it and add a bit of sugar/honey to make it fully absorbable again, thereby alleviating the problems with the new formulation.

My lowering of DHEA will be addressed after we tackle the thyroid and anything that arises from trying to address it.

Amino Acids Profile
Lastly I’ll cover our biggest new test of the year – an amino acid profile that was all out of pocket expense. We will see what happens by treating the things shown low on this profile, but I already feel the money was well spent.

This is the first time in 9 years of illness that Jeremy and I had significantly different test results. Granted my lowering thyroid does fall into this category as well, but it is not as dramatic a difference as what we saw on the amino acid profile.

It has been a nightmare to try and convince new doctors or officials we have had to deal with, that two people can both have CFS/MCS and similar test results. The amount of skepticism and outright disbelief that we are ill but instead just faking has been enormous. To finally have differencing test results, while meaning only one of us is good, it still brings much satisfaction to my heart to be able to point to something being different.

It is also interesting from the perspective of wondering – what finally changed after nine years to give us different results? Maybe we simply weren’t looking in the right places all that time…

This last profile measured the quantity of amino acids in our blood at a fasted state. It is absolutely amazing the impact amino acids have in bodily processes. Many amino acids can be made by the body or its organisms (bacteria in our gut), but some we can only obtain through outside sources – namely food.

The paleo diet helps with this because meat is a very good source for these essential aminos which we only get through food. Having low amino acids can be a sign of poor digestion, poor diet, or areas where the body is having trouble converting from one thing to another.

Jeremy and I tested nearly opposite each other on almost this entire test. As I said, this is the first time we have ever showed almost any difference, let alone such a dramatic difference in a test.

To go over each test thoroughly would be far too much information to add to this already long post, but there is now a tab of all the test results for anyone who wants to see more detail.

In a nutshell, Jeremy has some unbalanced ratios of some of his aminos but the general levels of everything except taurine are pretty good. Oddly, taurine is the only amino acid we were currently supplementing which makes it a little surprising to find his levels low.

On the other hand, my levels of almost everything were very low. This is also surprising given how much protein I eat every day. It is likely part of the problem has to do with poor digestion or absorption from my intestines, as well as problems detoxing. The MTHF panel we are doing next should help provide some answers to some of my low amino levels.

Of note, my “Urea Cycle and Ammonia Detoxification” (numbers 31-36 on test results) are all pretty much bottomed out. This could certainly be cause for some of my continual brain fog along with some other symptoms. Dr. Buscher wanted to see the results of the MTHF panel before treating this area due to the influence an imbalanced methylfolate process could have on this detox system.

To sum up this test, Jeremy will be increasing his taurine supplementation. I will begin supplementing with glycine, arginine, and methionine to start and more can be added later. Dr. Buscher will be researching what impact our imbalanced ratios of aminios are having on us and if they need to be treated, I think our test results threw him a bit of a curve ball on this aspect, especially Jeremy’s. Lastly, we will reevaluate these tests again in light of the findings of the MTHF panel we will be doing sometime soon.

XMRV
Lots of changes and lots of places treatment can lead. We never brought up XMRV (soon possibly renamed to HGRV) or Dr. Buscher’s impressions of its potential to be a key role in CFS. As you can see, there is a lot of work to be done in stabilizing some key body systems before we can even consider looking into what for now are still experimental therapies.


Ex nihilo

From the outside, my life would seem very simple. I do not work, there is no place I must be more than a couple times a year, my income is steady, and my needs predictable. Yet in this simplicity there is a large void that comes from not feeling as though I have accomplished much in any given day.

When life itself is a daily accomplishment, there is little satisfaction in it because tomorrow it will be as though today hardly was; in that the exact same things will need doing again. Little carries over because I do not have very much to show for all my spent energy in any given day. It is so frustrating to have such a small amount of energy to give life because I still remember the feeling of having completed something after a hard day’s work.

The simply joy in having worked till I felt as though I was going to drop, then looking around me to see the world was transformed by what I had done. My house would be clean from top to bottom, everything at work fully caught up and running smoothly, or my feet carrying me miles into the backcountry with nothing but a heavy pack on my back and a dog by my side. All of these things I took for granted when I had them, never seeing how precious this sense of having done something ordinary could actually be extraordinary in the size of feat accomplished.

Twenty minutes of cleaning up is now infinitely harder, equal only to the most taxing days before. My great trips to the backcountry are a walk to the end of my driveway and back. I never have the feeling of being caught up in my work or it running smoothly, as I now lack the capacity to do more than those things which are vital or time sensitive. Everything else must wait until they fall into one of those two categories, otherwise I will crash from over exhaustion and be unable to complete even the little I do now.

I really miss that feeling of accomplishment that was so easy to come by when I had more energy. It is very difficult even after these last eight years of CFS to accept that being able to wash one plate is a worthy goal. Paying one bill online actually is a day’s work well done.

Now managing to pace myself, to conserve energy every day so my body has some with which to bring about healing and a means to wellness, is the greatest accomplishment I can do and it involves me doing absolutely nothing.

Whoever originally said “Nothing comes from nothing” obviously never had Chronic Fatigue Syndrome.


Back from the Wizard

I have been taking a couple days to recuperate from the lengthy trip to see our doctor last Thursday. It was a very exciting day and also very exhausting because of all the excitement.

Timing in life really is very interesting to me. Here I am traveling most of Thursday, spending about an hour and a half at the doctor’s office and then traveling home. Meanwhile out in the world, a wildfire is spreading of information about a new connection between the retrovirus XMRV and CFS. It is all very interesting research on the retrovirus and wonderful that someone might have some answers for millions of us soon.

But closer to home, I have some answers of my own that I also received on Thursday. All those tests showed some important things for us. Once again, Jeremy and I had almost mirrored test results with only a one major difference and one minor difference. What is the most interesting to me is that for every test where we did have mirrored results, his were always a little worse than mine.

We both tested low for thyroid, Vitamin D, Selenium, and our respective hormones (progesterone/testosterone). These will all be supplemented; most we have already begun to work on as of today. Together we’ll be taking enzymes at main meals to help digest our food because our bodies are unable to produce enough enzymes on their own. We will also be giving each other vitamin b12 shots (hydroxocobalamin) a couple times a week here at home.

Where we differed majorly is he has a moderately severe Candida infection and will be on an antifungal for a few months, while I luckily do not have one. The minor difference was in each of us needing more of one type of antioxidant that the other was fine on.

While at the doctor’s office, we were shown how to do the b12 injections on each other – by the nurse giving us an injection right then and there.

I have to say that injection felt like a little bit of heaven once it started getting into me. About an hour after having it, soon enough that my butt still felt sore, suddenly I noticed that I felt good. Really good.

I felt better than I can remember having felt since this dark cloud of illness descended upon me eight years ago.

Jeremy also felt the same. We will be receiving our own supply of this miracle vitamin sometime next week. I know the wondrous sensation of health and wholeness I experienced the first time will likely not ever occur like that again, but it does give a tremendous amount of hope that this may be one of piece of the puzzle that has been missing for so very long.

With all the promise the trip to the doctor held, I can’t help but feel that promise was well met. To finally have solutions to some of the health issues plaguing us, it will be a very interesting next few months while each thing is slowly being righted after years of neglect and damage. Perhaps there will be XMRV answers and treatments by the time these current marvels of mine have run their course and I am in need of a new pair of ruby slippers to get me the rest of the way back home.