I just finished writing a postcard to send to Dr. Buscher, the physician we have been seeing these last 7 years. It was a surprisingly emotional experience.
He is a man who stood by us when many a doctor would have walked away. We were never made to feel like we were the reason our health was failing, but instead he understood that we did everything we possibly could to become well again. Considering the months it would take for us to go from him handing us lab work papers and the tests actually being run, months again between visits, and a severe lack of money complicating things further – he never gave up on us.
And when times became darkest last year, I couldn’t find my way out of the nightmare my health was plunging into – Dr. Buscher was there to light the way and guide me back.
Without his help over the years, it is unlikely we would have made it to see this wonderful island of Maui and find joy in living again.
Thank you Dr. Buscher for everything you’ve done and my only regret in moving to Hawaii is that I couldn’t take you with me!
It’s another sunny day here in the Pacific Northwest. Starting into the best time of year – not too cold, not too many bugs, and a few more sunny days. It only lasts about a month, usually most of April though this year it is late.
Life has been moving quickly for us the last few weeks. It seemed a slow, sluggish mire we had fallen into over the winter was going to plague us all spring. Then one morning someone turned the “LIFE” switch from ‘off’ over to ‘on’ and life began to take form around us.
It’s odd to say life started when obviously I’m still breathing and getting into mischief. However there is a difference between being alive and living.
This last 18 months I have found myself learning to live again and growing beyond my physical boundaries. Then the late snows in February and March crashed our health; it is very physically and mentally taxing to live in a tent during frequent snows. My world narrowed again to survival – just getting by for another week, another month, waiting to feel less awful. Thankfully an easy allergy season helped and in April we started to move past survival and back into living again.
As I am happily remembering, there is also a difference between living and thriving.
Two weeks ago everything changed in 24 hours. Living became Thriving. I think the last time we found ourselves thriving was in 2005. Before that… 2001, during the few months before life took a nose dive into the world of chronic CFS/MCS.
It’s been a long, hard road we walk in this life of illness.
The big news going along with this change is that we finally will have the means to find indoor housing. Yup, this couple in the woods will one day soon become homeless no more.
I find the prospect both terrifying and exhilarating at the same time.
Where will we go? What sort of place will we rent? I honestly don’t know, though we are planning on answering those questions this summer. With a bit of luck, we’ll be indoors by November; we’ve had enough of living outside during Winter.
Times like these it is hard not to jump into the first opportunity that comes along. Our health concerns and the restrictions it places on housing means we must move slowly to ensure a safe living situation is found.
It also means we opted not to see the naturopath last week. As we are not certain to be staying in the local area, we didn’t want to establish care with a new doctor (a costly endeavor) and then repeat the process in another few months. However, we have followed up on a considerable amount of blood work through Dr. Buscher and will know the results in a few weeks.
Where to live when the world has suddenly opened itself up to you once more?
How to get there and more importantly, how to find safe housing?
What type of change will all this have on our health?
I am looking forwards to finding the answers to these and other questions, which swirl around in my waking and dreaming thoughts.
Much time has passed since my last post. I hoped for inspiration to strike and provide a brilliant return post to share – but alas the brainfog continues to shroud my muse.
My hands have healed well. We made it through several weeks of on/off snow, but then crashed and are still recovering. The majority of spring allergies never hit this year as the snow changed up pollinating schedules for the alders above us. Western Washington is still having more rainfall than normal – and lately colder temperatures too.
It has been a very long time since I felt warm sunshine and I miss its tender kiss upon my face.
All in all – survived another winter. Hooray!
I have come out of this winter with a new plan of action. We will be seeing a local naturopath on May 5th and setting up medical treatment through her. The annual trek to see Dr. Buscher will not be happening this year. The stress and body strain from weeks of snow took a lot out of us. We simply don’t have the stamina to travel two hours away to see our doctor.
Fingers crossed we hit the right naturopath first try. I spoke briefly with her and have hope she will be a good fit for us. At the least, I don’t think we are walking into the nightmare situation almost every CFS or MCS patient has experienced – the doctor who doesn’t believe our illnesses are real.
Happy Spring Everyone!
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.
Nearly another month and still not doing well.
Jeremy is slowly (very slowly) seeing improvements with the twice daily nasal rinsing using oregano oil, salt, baking soda, and water. The glutathione nasal spray is also helping to heal his sinus infection. Its very slow improvement, a little more energy some days and a small bit more functional, but any improvement is good.
I too saw some improvement off and on this last month but then last week started to take a quick turn for the worse again. My small bits of energy have all but disappeared, daily sinus headaches again, lots of full body nerve pain, low grade fevers, sinuses swelling more each day, and a few other returning symptoms.
Called the doctor again yesterday – we agreed its time for antibiotics. Some who read this blog may wonder why we waited on them instead of going the more normal route here in America and jumping right to a 4-6 week antibiotic course.
When popping a pill for treatment, the medication does not go only to the spot needed. Instead it hits the intestinal track where it is then absorbed into the blood stream through the intestinal lining. There are a few problems with this plan when dealing with an infection at a spot of the body which does not receive as much blood flow as for example, the lungs do.
If the infected area does not have a high blood flow then the amount of medicine it receives will be much smaller and healing will be slower because of this. Also with antibiotics, taking them orally means they do a lot of damage to your intestinal flora. The human body is very dependent on the flora and fauna in our digestion tracks to aid in digesting food and helping our immune system keep bad things in check – like candida yeast.
When one takes an antibiotic, its not only killing the problem you take it for but also our cohabitants inside of us – basically going on a killing spree directed at an important part of your immune system while at the same time throwing a kegger party for the nasties.
I am going to be taking a slightly different approach with my antibiotics, a much safer approach considering the location. Instead of taking a pill a few times a day, I will be using a gizmo which turns the specially made antibiotic into a mist and is then breathed in through the nose via a nasal nebulizer. This greatly isolates the area being treated and will keep a vast majority of the medicine right where it is needed – my sinus passages.
It will still be a course of treatment lasting 4 weeks but the impact it will have on my overall health will be minimal compared to the bottle of pills you pick up at the local pharmacy.
In addition to this, I will begin using an antibiotic ointment for my nose tonight and continue this for about five days. As well, when all the antibiotics are done I will start a long treatment of an antifungal also with the nebulizer. This part of the treatment is expected to take a minimum of 4 weeks but very likely a while longer as the fungal part of the infection is much more stubborn than the bacterial.
Sadly, the antibiotic treatment will aid the fungal infection’s growth (just as it would in the gut with candida) by killing the good bacteria in my sinuses along with the bad, and is the reason for the aggressive antifungal use after the antibiotics.
It is very tiring to think I’ve had variations of this infection since very early March and am just starting a new course of treatment promising to last a minimum of two more months.
I suspect my initial sinus infection in March was bacterial and mostly (or even entirely) cleared up via natural methods. Then the mold levels rose dramatically in the environment around me in April when the weather warmed and became very wet, which quickly allowed a mold infection to begin in my still recovering sinuses. Then with enough time and my immune system being very worn out, another bacterial infection was able to take hold in the last couple of weeks while I was successfully treating the fungal/mold infection.
Hopefully hitting these infections hard with these antibiotics and stronger antifungals will do the trick, letting me again start to have more energy and finally feel better.
Had another phone appointment yesterday with Dr. Buscher our CFS/MCS specialist. Seemed time to consult him since Jeremy and I had tried everything we could think of doing on our own but to no avail.
It didn’t take Dr. Buscher long to figure out what is very likely happening to us. This year has seen a particularly wet and warm winter/spring which has mold numbers very high. In people with low health, mold can actually take residence in your sinuses and other parts of the body. This leads to all kinds of trouble.
The molds release toxins and then these toxins are in you. No having to inhale them in a sick building or ways to prevent exposure – its already inside. Add to this a bodily reaction to the mold infection taking root in you and causing your immune system to ramp up – inflammation, swollen glands, low fevers, brain fog, memory problems, greater fatigue than normal, and body aches all abound.
We had a mold sinus infection for several months in 2006 and in comparing symptoms it is nearly exact to what we are going through now.
He has us rinsing our sinuses twice a day with oregano oil very diluted which wowie does it burn. This should pass as the sinus tissue begins to heal with the lessening of the infection.
We will also be starting a nasal glutathione spray soon as I can get it made/shipped from the compounding pharmacy as its not something you’ll find at the local drug store.
Dr. Buscher said we should be having noticeable improvements within 2-3 weeks. Fingers crossed!
Its such a relief to have an avenue of recovery planned.
Words hardly express how frightening and overwhelming it can be to see the fragile strings of your life snapping one by one while you are desperately trying to stop your life from dissolving more each day.