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.
Have I mentioned that I love my doctor?
I had an appointment with Dr. Buscher this morning, by phone because of the great difficulty in personally seeing him. It was time to check-in with him as to our last six months and go over what testing Jeremy and I should have before seeing him in person this summer.
It was exciting to have a lot to tell him about and the whole appointment helped put the last six months into perspective for me. The last two months have left me feeling pretty lousy at times because of all the allergy and sinus troubles, along with Jeremy’s candida treatments causing a lot of MCS troubles for both of us.
Talking to Dr. Buscher today helped me to see that we have been incredibly busy on improving our health these last six months and that we have actually seen a lot of improvements from it all.
It can be difficult at times to set aside a few months of feeling worse and realize that there have been a lot of abnormal circumstances, one after another, which has been greatly influencing our health. Having Dr. Buscher ask a few key questions along the way helped to remind me that prior to all this odd stuff going on for us, we really were seeing substantial improvements.
Our MCS reactions had been getting noticeably less and our energy had been improving. I was feeling much less brain fog, enough such that I was looking forwards to having our car fixed and renewing my driver’s license.
Most people do not know this, but I had even begun trying to find us housing that would be safe for us and on our budget. I had one very possible lead with a man who owned an organic farm and wanted to talk with me about some housing he could offer.
Then allergy season hit weeks early, my health dropped quickly and we had to go right back into survival mode because there was no other option. Driving, moving indoors, or anything of that nature had again been pulled out of our reach.
Remembering the improvements we had made, albeit briefly, helps to renew my faith that we are on the right path and doing the right things. We just need time to recover from all that has happened these last two months and then I have little doubt that we will be seeing big improvements once again.
As for my doctor appointment this morning, Dr. Buscher sounded enthusiastic about the changes we have made on our own since last seeing him – the largest having gone paleo. He approved of the tweaks I have made/will make on my own to our supplements – our increased fish oil, beginning some iodine, changing up the type of magnesium we take, calcium, and doing our vitamin b12 shots every three days instead of 1-2x’s a week.
He also gave me the reassurance I needed to hear that my thinking had been sound in not supplementing with thyroid medication after we had a large reaction to it the first day we tried it and instead waiting to see how our thyroid changed on its own after we got our diet and supplements changed up.
We will be retesting our levels of vitamin D, hormones, thyroid, and a new one – vitamin K. Jeremy and I will also be finishing up with an amino acid panel from last year. I’m curious to see how some of these numbers have changed with all that has been improved upon since last October.
Dr. Buscher is a wonderful doctor who is incredibly supportive. He really cares for his patients. This is very obvious in the questions he asks and the excitement he shares when hearing of improvements. Most people who have CFS, MCS, FM, PTSD or other odd illnesses know how rare it is to find a doctor who is supportive, caring, and knowledgeable. I am incredibly lucky to have found one and always enjoy my appointments with him.
It has been a three days since the cold front finally broke. When it did we got a couple inches of snow, not really all that much for around here. I expect a couple more snow storms before winter is done. This one only lasted a day this time which was very nice. Luckily behind the snow was a warm front and now it’s a balmy 50 degrees today, though it does come with the price of heavy rain showers. Such a huge change from our well below freezing temperatures less than a week ago, feels almost like spring! Here are a few pictures I took of the snow:
View from under our tarps.
Jeremy having to keep dry while getting hot canning jars for us to stay warm.
The beauty of the snow.
The rest of this is just a quick update to my previous blog articles.
For almost the entire month of November both Jeremy and I had a really difficult time around here. I wrote about the crash in “Tides of the Storm” and “Ex nihilo”. It was probably one of the hardest months we have had since moving into this tent and very possibly the hardest in the last 2.5 years. November ended with me having one of the worst flu bugs I can ever remember having and Jeremy having a tooth extracted that had been abscessing for the last several weeks at least. But with the first week of December we both started feeling slowly better and getting our feet back under us solidly. We decided that a rest was much needed and are taking a month off of all detox inducing supplements so our bodies can heal and be ready for the next round.
I have written a few times of the animals we have around here in “A More Simplistic Life” and “Squirrels!” We still see our little Winter Wren friend and he has become much braver in the last couple months. Just a week ago he was hopping around and looking for a tasty bug to eat when he got some crazy notion in his head that the pill Jeremy was handing me must have been for him. Right as I grasped the capsule I suddenly see this little form dart from the corner of the tent and do a quick swoop past my hand. As he went by I felt his little feet grab my finger nearest the capsule and quickly let go as his momentum carried him onwards. What he was thinking, we will never know but it did provide for a nice bit of comedy.
Our squirrel friends (or annoyances as was the case for several months) have been quieting down as the winter progresses. Surprisingly we saw one just behind the tents digging in the snow on Sunday, looking for some maple seeds. I wouldn’t have expected to see them out on the one day of snow, but can’t argue instinct with something who’s vary life depends on it. Luckily they have been much quieter in the mornings and so we get to finally sleep as our circadian rhythms need. I think this is certainly one of the big things that is helping us to recover from our crash in late October and all of November.
Also, an update on our progress after the big doctor visit we had early October and written about in “Back from the Wizard”. We have been taking our b12 shots every three days, using the hormones as prescribed, and taking all the additional vitamins suggested (vit D, more C, more Selenium, and more CoQ10). I have changed several of the brands we used for our vitamins. Where monetarily possible we are now on food based vitamins which feel a lot better to be taking. I wasn’t sure if there was a real difference between food based and something developed fully in a lab. However, when I had the nasty stomach flu a few weeks ago I quickly felt the difference between the two types as the fully lab manufactured ones were not even able to be tolerated by my stomach for five days, while the food based ones caused no stomach trouble.
That affected a lot of my decisions when it came time to buy our vitamins the following week and I think I have us on substantially better vitamins now because of it. I also was disturbed to find a possible source of mercury ingestion in our fish oil, apparently at some point it changed from “free of mercury” to “lower than industry allowable limits.” Ack!!! We now take krill oil and it is worth every extra penny to know it will not be adding to the abundance of mercury we must deal with.
In small ways we are seeing the benefits of these changes. It is very likely that the crash we just went through was brought about by some of the readjusting going on in our bodies to the new therapies. Certainly the vitamin b12 shots (administered at home) would be a huge catalyst for change even if nothing else was. I have noticed some good changes in Jeremy as his hormone levels are going back to normal and some positive things as mine do as well.
Within two days of our doctor trip we also stopped eating all soy products, though I did just find a couple supplements that had some soy still in them. These are now gone too. We have stopped being vegetarians, something which was hard from me as I had been one for 12.5 years, but can feel a lot of benefit happening from now eating animal sources for protein. I think this is also responsible for some of the good changes taking place in us. Currently we are working towards a large change in diet and are excited to see what might happen once we have fully made the change. We feel better in small ways every meal we eat differently now, I have high hopes for what may occur when all meals are changed.
As for our house… well nothing seems to have come of all my efforts to find help finishing it and described in “To dream of a Home” and “Fate’s Quirky Sense of Timing.” One woman at the NW EcoBuilding Guild did seem receptive to talking about my situation but after hearing how bad things are she completely disappeared. It is unfortunate she couldn’t at least have been kind enough to say she couldn’t help, but to act as though we do not exist anymore is pretty ridiculous.
I also spoke with the president of the guild who upon learning that we were not paying members she immediately became very aloof and wanted nothing to do with us either. I had tried to explain that being almost completely housebound, on a fixed income with high out of pocket medical costs, and scrimping every cent we could to finishing building our house that it just hadn’t made much sense to pay monthly membership dues for meetings we would never be able to attend.
But it did not matter at all. Unless we had been paying for services we were too disabled to use even once in the four years we have been trying to build, she wanted nothing to do with us. If it were me, I would have looked at an opportunity to get us as new members and make a statement that it is an organization not just about recycling building products but about the people who live in the world we are claiming to want to save. I have to wonder who they are trying to save the planet for if not for the people who are in their community.
There are a few other exciting bits of life that have been going on around here but I will save those for later as they develop more fully. I am starting to finally feel like there is some progress being made from all the hard work we have been putting into life for the last four months since starting the climb back up out of the hole this summer’s crash left us in.
Ok, maybe this wasn’t such a quick update after all. Surprising to see how much has been happening when most of the last few months I often felt as though very little was going on. Small things have a way of adding up over time to much bigger things.
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.