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.
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.
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.
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.
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.
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.
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.
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.
My life has been led by far too much fear.
If you had asked me ten years ago while I was still healthy, I would have been very sure that fear played little role in the direction life was taking.
I would have been wrong.
Over the last several months I have been thinking about fear’s role in my life. Its not just the fear I felt every time I stepped out into the darkness at night alone the last eight years, but also the fear that has unknowingly held me back from jumping in and living life instead of life living me.
I see fear in my choice to stop following veterinary medicine after a negative experience while observing a surgery on a large dog in my 2nd year of college.
There was a great deal of hidden fear that caused me to be content with stoner friends who rarely did anything but sit around and have a good time.
In fact, an amazing amount of my life decisions have been chosen based on an unknown fear of failure. Much easier to set expectations of myself lower so that I can be the superstar I want to perceive instead of merely being average at something I put a lot of effort into.
I have done a lot of really great and brave things in life, but there was so much more I would have done had fear not gotten in my way. I wish I had known this years ago, before illness took away huge chunks of my ability to live and follow my dreams.
After becoming ill, my fear took on a whole new dimension as there was suddenly a tremendous amount of things to be afraid of. Overnight I had to become hyper vigilant of toxic exposures which could severely impact my quickly diminishing health.
These could be found hiding in plain sight on any stranger I passed on the street, in any building I entered, any street I walked down, a shift in the breeze, a box in the mail, and many other places. Perfumes, fabric softener, car exhaust, fresh paint, solvents, pesticides… so many things and more to be wary of.
Suddenly everything I knew about being safe in the world was turned completely upside down and every where I turned was another dangerous situation that had to be avoided or minimized at all costs.
My world had become a battlefield in a hostile and foreign land.
Even at home I was not necessarily safe. Living in a tent with nylon walls does not offer much protection against anything. I found myself fearing mountain lions, bears, trees falling on our tent in a wind storm, heavy snow storms, power outages, people not respecting our privacy and strolling into camp at their leisure, shifts in wind bringing toxic fumes from neighbors into our tent, neighbor dogs rooting through our stuff, and raccoons doing the same. Worse yet was all of the above, but in the dark where I could not see it coming.
This fear had made me unable to leave the comfort of our lighted tent at night without Jeremy nearby, even for a simple trip to our ‘facilities’ because it meant being completely enclosed in the dark with nothing but my flashlight to see by. I used to go backpacking alone overnight and now I could not even tolerate 1 minute in the dark by myself without a panic attack overwhelming me.
Then a few months ago something began to change.
At first it changed so slowly I didn’t even see a difference until last month. I was up at our refrigerator area (about 70 ft from the tent) and using my sinus medication. It takes about 20 minutes for the whole process and it was quickly getting dark. Oddly, this hardly bothered me at all. I stayed the whole time and then calmly walked back to the tent. First time in eight years I have been able to do anything like this.
Over the last few weeks I have even gotten to the point where I have wanted a little quiet “me time” some evenings. I walk up to the chair we have by the fridge, have a seat, and just relax for a while – after dark. Critters rustling around in the bushes, breeze making strange noises in the trees – none of it freaks me out anymore.
When I do get spooked a bit, it is a pretty simple matter to calm my mind and body back down to a place where I can continue to enjoy the time spent alone, in the dark with only my flashlight. I have actually turned it off a couple of times. Only briefly off, but I still had the courage to do it.
I am seeing this same shift away from fear in many aspects of my life and how I look at situations. Such as making a very important and empowering choice to stop fighting my situation and working with it instead.
To fully explain what brought about this change would take at least one more article, very possibly more. In summary, I have been utilizing alternative mind/body healing practices for nearly a year, specifically EFT (Emotional Freedom Technique) and Reiki. It is these practices to which I attribute many of these massive changes.
I have not spoken of these things here in my blog because of my fear that at even merely mentioning I am finding healing in alternative means, it would damage my credibility and the degree my chronic illness is taken seriously.
Having one’s integrity and mental soundness questioned goes hand in hand with a diagnosis of Multiple Chemical Sensitivity and Chronic Fatigue Syndrome. I was reticent to add to that by opening the door for further skepticism with alternative therapies. It appears that in writing this article, I am again seeing the same shift from a fear led life to one I lead on my own.
Too much of my life has been governed by fear. That chapter is now closing and it is time for me to write the next chapter in my own words.
In life we have choices. Choosing gives us power. When we are thrust into a situation in which we have very little choice, it can leave one feeling very powerless. Thus has been my situation for the many years I’ve been homeless in this very tent.
For years we have tried to find a way out of our situation and seem to have only dug ourselves in deeper and deeper each time.
We tried to build a house – now we are in debt we can barely cover due to our increasing medical expenses, can not finish building because the majority of the money ran out years ago, and are now left with a half finished structure too toxic for us to live in.
Three years ago we started an intensive regime of supplements which did show much promise in healing us – then a misstep with adding just the wrong type of a much needed nutrient (b12) and all our hard regained health crashed around us in a matter of a few weeks. This was the instigator of the crash from which we are only just starting to pull out of finally, a full year later.
Stuck in a difficult situation, all the motivation in the world to pull yourself out of it yet chained to a body incapable of hardly even moving at times for the most basic of needs. Its enough to drive a person nuts.
While these last few months have passed by and our health declined further and further, all thoughts turned to escape from this situation, no matter the cost. I started rooting through all the ads for rental housing, day after day, looking for the “perfect” place for all our needs – super cheap, hardwood or tile floors, no fresh paint or remodeling, no pest control, no mold, no super close neighbors, no gas appliances, and a landlord willing to work with our MCS problems … in other words, looking for the near impossible.
Even assuming we found a place that matched everything, it would still have the possibility of not being right for us depending on the lifestyle of the last few tenants. If they had been incense burners, smokers, strong laundry soap users, heavy perfume wearers, or any number of other highly toxic aromatic things in daily life, then that too would rule a place out.
Yeah.. darn near impossible at this time.
And then a few weeks ago, Jeremy and I came upon a Choice.
We could keep going crazy looking for an exit to the cage we found ourselves in these last eight years or find within ourselves the key to dissolving the cage bars surrounding us and finally be free again.
I am not entirely sure how we found the ability to liberate our minds from the cage, thus freeing our souls, but I do know it started with a choice to stay.
All these years I never felt like it was by my own choosing to be here in a tent. It was always circumstance that forced my hand, left me no other options. Left me powerless.
As simple as it seems, we decided that barring unforeseen changes we would stay here for the next solid year, work very diligently and without deviation from a healing plan we wrote out that day, and most importantly – we made a choice to stop pacing the confines of the cage but to instead embrace the life around us as our own.
And with that we were freed.