Sunday, October 23, 2016

waiting on medical tests bites

Bad pun. Sorry. It's just an expression that fits.

I don't remember being bitten by any tick in recent years, but I'm sure that's what happened. I do recall a tiny (and I mean just a couple millimeters) brown bump on my skin that I thought was a blood blister simply disappearing one day as suddenly as it had appeared. I never thought of it then, but I think of it a lot now.

I'm waiting on lyme disease testing. I've been to a doctor outside the normal clinics who has an open mind and takes the time to consider EVERYTHING.

He suggested that ALL of my symptoms over the last year and a half fit with Lyme Disease. I've been researching everything I can since then while waiting on the Igenex testing for Lyme and co-infections. I believe he's right but am waiting to move forward on treatment until we know what exactly I have. The rising white blood counts I've had on blood tests over the last year and a half point to a growing infection, and LD fits.

I have good days and bad days. Mornings are usually my best time of day and then it's generally downhill the rest of the day, but occasionally I have a good day all day. The worst for me are neurological symptoms--brain fog, memory problems, severe insomnia (still!), and air hunger being the most intolerable. There are also itching, pins and needles, and crawling feelings on different areas of my skin plus aches and muscles twitches and headaches. Some days I can't tolerate sunlight. Noise stresses me out something fierce, and it doesn't have to be a lot--several babies fussing in church one day ran me out because I couldn't take it. I can't describe the tension that rises up through me into an anxiety attack. And then there's the sometimes debilitating depression. It's worse than any simple blues when it comes on. This isn't all in my head but my brain and nerves feeling like they're on fire.

I've learned to deal with it through supplements and diet and have managed to slow the degradation of my quality of life. I'm holding pretty steady while trying to patiently wait, and am getting my nutrient levels up that have been shown to be deficient and some that I suspect to be deficient. I still have some histamine intolerance, but an immune system under attack will call in all its forces, including the mast cells that release histamines; unfortunately having the immune system going full-bore for so long is stressful on the endocrine system, which is where the Hashimoto's and adrenal issues have come into play.

The big picture in my search for the root of my health problems that came on a year and a half ago is not what I would have expected. I'm relieved to find an answer and anxious to get rid of this. But I've had it this long and understand that I may never be able to rid my body of the bacteria after all this time. From my understanding, late-stage Lyme really can't be cured but it can be treated and put into a state of remission indefinitely, as long as my immune system stays strong.

What's more frightening is that it's here. I didn't necessarily have to go out of state to get the disease. In my research, I came across some information about Lyme in North Dakota, and these are reputable sources:

NDSU Extension Service--

CDC-- (New Lyme-Disease-Causing Bacteria Species Discovered)

Entomology Today--

I'm making it my mission to spread this to any doubters or naysayers who think ND doesn't have LD--it's here, has been for some time. We have deer ticks infected with Borellia in our state, and not just the old B. burgdorferi but a new species that causes Lyme, one that may not show up positive on the current tests, one called B. mayonii. Once I get my test results, you can be sure my primary care physician is going to get an earful from me, especially when he was so dismissive of my symptoms being "anxiety" He'll be getting a lyme education, so hopefully the next patient doesn't have to go through all that I have...When it comes to our health, we have to be our own best advocates. "Never give up; never surrender."

I will update again when I have more to report. It's been four and a half weeks since my blood went out to the lab for testing. I hope to have the results any day now.

Sunday, September 18, 2016

Been busy but trying to get back to the swing of things

It's been a while.

I've been battling severe insomnia for almost a year, and with it, a terrible feeling of not being able to get enough air, a feeling usually described as air hunger. I've been through a lot of ups and downs and finally feel up to being online again, at least in some limited extent.

I've joined instagram as melanienilles_author to share pictures from my life there instead of on Facebook, but I feel that the time has finally come to deactivate my FB account. I've noticed that my personal profile is not much more than a stressor in my life, but I can't have that without the author page. It's too hard to be able to separate seeing one from the other. With a chronic illness, one of the first steps to feeling better is reducing stress. I have enough in my life without feeling left out.

This type of illness makes one feel alone and FB really creates even more of a vacuum, despite the friends who might gather there. I've tried, but I feel outcast and the best way to feel better is to eliminate that altogether. I'm sorry to those friends who only gather on FB and nowhere else. I hope you stop by other online places.

It's also hard being sick for so long because you feel like others think you're a hypochondriac. That's not the case at all, but I've even wondered about myself sometimes. However, I've now found a local, holistic MD (besides the NP I have been seeing at another independent clinic) who has been able to confirm with laboratory testing that I'm not going out of my mind and that this is all a real medical ordeal. I had hoped he would have a different perspective than other doctors and I have so far not been disappointed.

Since this began almost a year and a half ago, I finally am feeling vindicated in my suffering. While we still don't have a complete answer, this new doctor, and his associates that work with him, (like the NP I've been seeing) acknowledge the issues of Hashimoto's and the complexities of MTHFR that I've been dealing with; and he has taken it a step further, by suggesting there may be an underlying infection behind all this. Hallelujah! I feel that I might finally find an answer to the question of "What the h*** is happening to me?!"

I am still not sleeping well, but have found that just a couple of supplements can make a difference and help me reduce the dose of sleeping meds I need--I don't like relying on medications. I've healed my gut too well--I get sufficient amounts of most nutrients from my diet. However, I keep dairy out for fear of the wrath of acne; tested negative for intolerances, but I get acne breakouts according to the amount of dairy I consume. It took a while, but I discovered a calcium/magnesium/D3/phosphorous supplement that is sublime for calming my mind and making up for those deficiencies. The others are a low level vitamin E and a low dose of SAM-e. I've tried just about everything else, but I can no longer tolerate B supplements--they're like caffeine in the tiniest amounts and I don't flush them out easily. I don't seem to need much of what I do take, but maybe that's because I am petite and the RDA is based on some "average" that is far above my size. Who knows.

Anyway, I've struggled and been through hell, but I've found some peace and am still learning how to keep peace in my world. I still have insomnia, aches that move around, air hunger, and other issues, but I haven't given up.

In fact, I've been able to improve enough from my lowest point that I have finished writing the first draft of Nemesis. That story has been a lifeline, although a thorny one, through all this. In a way, because it was so difficult to write, feeling like I had to finish is what kept me hanging on and not giving up on at least finding some relief for my symptoms. But recently, after finding those supplements I listed above, the creativity came back and the last part of the story wrote itself better than I ever imagined it could. I'm very happy with it.

I can't wait to share it with you! Because I wasn't sure of how things would go with my health, I had moved the release date back to March of next year. However, if the editing goes well, I'll be able to release it sooner. You've waited long enough, but I really want to make this the cream of the crop. Starfire Angels fans who have stuck it out will be largely fulfilled with this, as it will close up a lot of storylines from the series's more beloved characters.

I don't know what I'll move onto next; but it feels good to wrap up one series, especially in such a satisfying way. My future writing depends on what the new doctor does for me. It would be nice if my creativity would blossom again like it did when I wrote Starfire Angels. My goal in getting better is to find that intense spark again.

Monday, May 23, 2016

Long time no see

Yeah, I know it's been a while. I've been dealing with issues and mostly staying off the computer. It's been great in some ways, but I'm still working at resolving the severe insomnia that requires a VERY strict sleep regimen and medications. It's barely manageable but at least I can usually get 4-5 hours a night. That's better than I was in January.

I've returned to writing, but not as urgently as I used too. In fact, if this experience has taught me anything it's how to slow down and take it easy. I really appreciate each moment and let it linger.

That attitude is helping me immensely. My stress level is much less, despite the responsibilities and health issues in my life.

Buddy, still fuzzy boy (April 2016)
One of the blessings I've been granted is the horse I bought last fall at auction. He's a young large pony. When I bought him, he was tense, sore, had half a face covered in ringworm, flared hooves, and was headshy. He is transformed into a beautiful boy who loves people (I suspect mostly because we bring treats ;) ) and is willing to do whatever I ask and enjoys being touched anywhere (and he's finally letting me give him muzzle kisses). The ringworm was easy to heal with miconazole, then he had his teeth done and sores in the mouth healed and he was more relaxed. He wouldn't let me handle his feet last fall and now he sometimes gives them before I ask! It's all because I was patient and slow, not in a hurry, and appreciating just the moments I had with my own horse again.

After a winter off while I went through the worst sleep and air hunger issues, he relaxed into his new herd and healed from the remaining soreness in his body from the large men who had been on his back. He grew tight new hoof wall with flaring being trimmed every couple months. This spring, he was stepping out more, cantering easily (he almost wouldn't last fall), and had a bit of an attitude (he was showing his real personality, not the cowering one I had seen in the fall and recognized).

This winter, I was at a low point when I saw the story about Amberleigh Snyder and realized that I at least have full function of my body, despite the breathing and sleep difficulties. I pushed myself to get out and work with Buddy, even if just to groom him. That's what I needed, and it's how he got to this point. Lots of patience and taking things slowly.

Buddy learned to longe properly. However, he had his tantrums about the side reins, despite me setting them at a length where he could stretch his head out easily and barely touch them. He liked to turn his head and gawk at everything instead of paying attention, but the side reins force him to stay pretty straight. Now, he's learning to accept the bit (a double-jointed thick snaffle easier than the tom thumb that he was ridden with in the auction) and keep his head in front of his chest to stay balanced. The tantrums have vanished and he's learned to yield to contact rather than fight it. Plus, he's learned voice commands.

And he's not a spirited horse but one of those nice, quiet, slow horses that can move out when necessary. With his foot soreness alleviated, he really has some nice gaits for a large pony of his stocky build. He's much more comfortable than he was last fall.

And today he was doing so well on the longe-line that I decided it was time. I haven't been on a horse in nearly two years and he hasn't had a rider since the sale in early October (7.5 months ago). I've been filling in holes in his training and working to make sure he was confident and trusting enough that I felt we could make it a good experience. He was tense and I was a little apprehensive, but everything came back to me to make it a positive experience for him. He gave me a nice contact, and my hands moved with him so that his tension dissipated. And he learned quickly from only moving off with a tight leg and rub of my heels to a feather touch of my calves; he figured that out himself as I used progressive pressure.

The whole experience could have been much harder, but it wasn't. He went from tensing up a few times when he wanted to resist me (but didn't go that far) to relaxing and trusting me as he realized I was holding firm and simply waiting for him to respond. I couldn't have asked for better, but I'm in the role of good cop (rider) after his time being cowboyed on (ridden without empathy). I'm grateful that he was previously trained, but I'm also grateful that I got him at such a young age that I could easily teach him that it's okay to be himself with humans. He's much more trusting and confident now.

I knew Buddy was a good horse--he's always just had the look in his eye of being kind--but he really needed the right handler to bring out the best of his nature. I didn't know what to expect today, but I knew we'd done a lot of work teaching him to relax on the ground and trust me; he'd been very tense and rushing when I first started ground work last fall, before giving him the winter off, and had been very head shy. He learned to trust my hands, which he's come to expect to bring scratches and massaging and when connected to the reins, are giving and light.

My soul is made up of horses. When they let me into theirs, I feel whole. I feel like Buddy lets me in a little more each time I see him. And that is what I need to heal so that I can live fully.

ps--When I feel good like this, the writing comes more easily too ;) I've written two more chapters on Nemesis in the last month or so, and you can thank Buddy for that.

Thursday, March 24, 2016

The Value of Sleep

Okay, so the low-oxalate diet is really paying off--after a week on it and realizing more and more sleep (with meds but only diphenhidramine, no more super strong sleep meds necessary), I slept nearly the whole day and night yesterday and NO sleep meds to accomplish that--woohoo! Talk about catching up! I still have a ways to go to recover from the toll that 6 months of 3-5 hrs sleep per night MAX (with meds!) has taken on me. This is what I have been suffering--severe insomnia and because of that, adrenal fatigue leading to air hunger (dyspnea), depression, brain fog, and memory problems--that has kept me from writing except on rare occasions when the clouds briefly parted.

Over the last week my creativity has been coming back more consistently, but I can only hope that this continues. There have been many setbacks just when I think something is working, so my fingers are crossed that I am FINALLY on the right path. The last 11 months have been the most stressful in my life and only seemed to get worse and worse. I wasn't sure how much more I could take.
This turnaround gives me renewed hope. However, there is still one issue that is ongoing. With the return of refreshing sleep, I will have a better chance of a full recovery, but it won't be as quick as the sleep. The breathing issue (dyspnea) seems to be tied in to adrenal function, which is on the brink of failing (hence the sleeping all day yesterday). While the oxalates kept me wired even while tired so that I couldn't sleep, it drained my adrenals, which is why the breathing grew worse and worse. Right now, I'm trying small doses of pregnenolone on top of high doses of B vitamins and it seems to be working, but I've only done that for two days. I'm breathing easier than on B vitamins alone. I think the reason so many of the herbal adrenal supports didn't work for me is because those herbs are high in oxalates and compounded my root problems.
I had a visit with my FMNP yesterday and we decided to go ahead with this hormone precursor to help the adrenals (which convert cholesterol to pregnenolone, which then is converted to pregesterone, cortisol, and DHEA, the precursor for estrogen and testosterone). By supplementing what the adrenals are supposed to produce themselves, it relieves them of some of the burden and allows them to heal faster. I had been taking a low dose of DHEA for the week before and that seemed to help, but I think the precursor even for that, pregnenolone, is more useful. This way, my body can balance out where it needs it, and I suspect it needs it for everything. I've started low and already noticed improvement. I will increase as I adjust to it.

My immune system has been on high for too long, although it has been nice to go several months without cold sores, colds, and avoiding the flu. Cortisol balances the immune system, helping to switch it on and off. I suspect that my body was using all the pregnenolone it could make for as much cortisol as possible to the detriment of the other hormones (tested low in DHEA), but it wasn't enough to turn off my immune system, which is why I was having issues with anything that boosted it or caused it to go into alarm mode (like those innocent-seeming probiotics that I had to quit taking). I also could not keep weight on no matter what or how much I ate, even when I didn't exercise. Sure, you might think that's awesome, but not when you feel like crap otherwise, especially if you eat the wrong foods (of which there are many), and it's scary. I couldn't do anything or I risked melting away. Also, sitting on the couch is boring. I like to be active and this has been an especially trying time for me in having to be sedentary.

I also learned that I don't have a histamine issue. All that was due to the oxalates; although initially my gut might have been enough of a mess to not break down histamines adequately, that was corrected.

I want to feel like my old creative self and finish NEMESIS and move on to other projects, to get back on track with my life--family activities, horse training, and writing. I'm praying that this is the answer I sought. It's made me realize that we can't take anything in life for granted. Our bodies are much more fragile than we think, although they are also very good at healing when we are good to them.
I've learned through all this to eat well, minimize stress, and really appreciate the good moments while they last. That is a lesson that must be experienced to fully appreciate.

Saturday, March 19, 2016

Digging up roots

When we have a medical problem, we look to medical professionals for answers. They're supposed to have the knowledge, training, and experience to understand how our bodies function. In a way, we expect them to be mechanics for our bodies.

But there's something wrong with the medical system. Part of that is the insurance companies dictating how they do their jobs. Another problem is the large corporations running many of our hospitals and clinics.

That's why independent clinics are so valuable. However, even they have their limits of experience.

Which is why I love the internet. Without it, I wouldn't still be here.

I've found a LOT of information, some valid and some not, or at least not to me. I've had to experiment to find what works and I've had to read a lot of sites and books and sift through it for the gems of knowledge. Two of the most valuable books I've read taught me to look for the root cause, rather than stop with symptoms. Because of those, I dug deeper than seeing hormone imbalances to find WHY they are awry, why I couldn't sleep and why I had air hunger so badly. I thought the severe insomnia and air hunger were connected so that the insomnia was causing the air hunger, but that wasn't quite the answer I found...

This last week, I put together some connections that linked up: 1) I learned by experimentation that extra B6 and choline/inositol greatly improved my air hunger symptoms; 2) I found a blog post linking increased need of B6 to oxalates, the same post that came up because it started out as B6 relieving her air hunger, like what I had observed in myself; 3) I found information linking oxalates to digestive problems; 4) I observed that my air hunger is worse with proteins and fats, which are more difficult to digest; 5) Oxalates bind with calcium to form crystals, which attract more calcium to form 80% of kidney stones; 6) A week ago, someone I know was passing kidney stones and described the pain for me--I've had that pain frequently on a smaller scale; 7) Oxalates wreak havoc throughout the body, not just in the kidneys and bowels, including increasing allergies and asthma symptoms; and 8) I had been increasing my consumption of high oxalate foods over the last 5-6 months without realizing it (I wasn't on that path of thought yet, until I looked back).

After those and other observations of when things really went downhill for me, I decided I had nothing to lose in trying a low oxalate diet. But I went too fast. The first 2-3 days of cutting out the high oxalate foods that I had added in to make up for cutting out high histamine foods, I also minimized medium oxalate foods. As a result, I went too fast and had intense pain throughout my body and terrible sinus congestion. I felt like I had the flu, but it wasn't that severe and I didn't have a fever. But that faded by the fourth day to almost nothing (still enjoying small amounts of chocolate which is VERY high in oxalates, histamines, and salicylates). This morning, I had my tea without any histamine symptoms!

What does this have to do with sleep? Oxalates clearly cause kidney irritation and likely damage from those crystals and stones moving around. The kidneys produce renin, which is a signal to the adrenals. The adrenal glands produce various hormones: cortisol, aldosterone, epinephrine (adrenaline) and norepinephrine (noradrenaline), and androgen hormones (estrogen, progesterone, testosterone). These all carry out various functions in our bodies. Estrogen plays a part in serotonin (our "feel good hormone") production, which is needed to convert to melatonin, our sleep hormone. Cortisol levels also affect our energy levels, peaking first thing in the morning and declining throughout the day, but can jump around when we're in a state of dysfunction--peaking in the middle of the night and waking us at 3 am, is the most common example. These two alone can wreak havoc on our sleep-wake cycle.

Everything is connected. Our bodies are complicated machines that need the right fuel. Sometimes the fuel filters work right and sometimes they don't and our bodies build up more of the wrong things, like oxalates, because it can't clear it out as fast as it accumulates. This clogs up the system and throws it out of whack.

That's where conventional medicine fails--cutting off the tops of the weeds while leaving the root causes so they can grow back and continue to choke out the healthy plants (cause problems in our bodies).

But back to the oxalates. As you'll find in searching the internet, our bodies produce most of them, but so do plants. So, as we consume foods, we ingest even more. Our guts are supposed to break them down (apparently a particular gut bacteria feeds on oxalates in our foods but we've upset the balance with our environmental and food chemicals and antibiotics). Oxalates bind to minerals in our foods and are excreted in that way also, but this is damaging to our guts and prevents us from absorbing the minerals we need. As our guts are damaged, so too is the ability to produce the enzymes that break down histamines in foods (also reliant on B6) until it heals. Luckily, our guts heal fast if we provide the right fuel for our bodies and minimize the potential hazards to that process. Once we've healed (which can take several months but under the right conditions can be as little as a few weeks), we can add back some of those foods, on occasion, that can cause damage (so our bodies have healing time in between).

For myself, I had to try many different avenues, and I could be wrong about this, but I don't think so. Within one day of cutting out high oxalates, I started sleeping better. Even while oxalate dumping symptoms plagued me for a few days, I still slept better than I have for the last five months, and my sleep over the last four days since starting this has only continued to improve, as has my air hunger (dyspnea). I started this journey thinking I needed thyroid hormone, but I kept digging for answers and finding new roots as I read more and more (contrary to my doctor saying I read TOO much). And apparently oxalates can cause thyroid problems--an AHA! moment for me.

I had some VERY serious problems for a while and found some relief in sleeping medicines, but the big name brands didn't always knock me out--my insomnia was that severe. It is a relief that this particular diet finally gave me relief from that issue and the histamine intolerance (not totally...yet; I've still got some healing to do before trying vinegar and yogurt again)--I am so very grateful that it was as simple as a diet change. I will need time to recover fully from whatever damage has been done in my body, but I feel that I am on the right path and would like to thank anyone who has posted about their issues online for sharing so that I could find it as guidance on my own search. It may not be directly pertinent to us, but sometimes another person's experience can lead us in the right direction for our own suffering.

I hope my summary here of the research I did on oxalates and my own experience can help someone else at their next medical visit.

I am not a doctor, nor am I trying to provide medical advice. But I do believe in holistic healing and am sure that others suffer as I have and are looking for an answer. I can only say to keep trying and be sure to consult with a medical professional you trust and dig for the root causes of whatever ails you. I found a functional medicine clinic that did MUCH more than my primary care physician to rule out possible causes for my problems--a nurse practitioner who actually listened to me and pursued different avenues--but I still had to do a lot for myself.

Friday, February 5, 2016

A new favorite meal

Having Hashimoto's isn't fun, but the people who hang out on forums are great. We all have our own level of suffering.

Being on the AIP diet and further limiting it depending on my level of histamine tolerance can be depressing sometimes. But it works to keep things under control.

Many of us on AIP do so out of necessity, but others sit on the fence or turn up their noses. It is difficult and feels limiting, but you learn to cope. Part of that is finding new recipes and trying new things.

I've learned that I LOVE oven baked sweet potato fries and homemade chips.

I've also learned to appreciate more refined herbal tastes like Rosemary and Basil.

One of my favorite dishes is basil chicken. I'll put a breast in a pan with some coconut oil and maybe some olive oil. I'll then sprinkle Himalayan or sea salt on it, a little pepper, and a lot of basil. Cut up some onion, mushrooms, and green onion and let that cook on the stove top on low and covered until the top turns white, then flip. If the heat was right, it will cook inside and be a light brown on the bottom. After flipping cook for a while longer, until the basil covered side gets light brown on the meat.

After the chicken is cooked, I'll sometimes toss in some zucchini slices or zoodles and/or asparagus for a few minutes, long enough for them to pick up some of the flavor from the chicken, onion, and mushroom juices.

And lately, I've been adding a side of cauliflower mash. It has become my new favorite mashed potato replacement. I can't have dairy, but this doesn't require dairy. I simply steam some cauliflower with a little bit of yellow onion until it's about ready to disintegrate. Carefully drain of excess liquid and then puree with a hand blender and...voila! Looks just like mashed potatoes. Sprinkle on some Himalayan or sea salt and toss in some chopped green onions and it's too die for.

The results of the chicken and cauliflower basics:

(The yellow is the olive oil and chicken juices from cooking the chicken and toppings and is great for dipping the chicken into.)

Saturday, January 23, 2016

The Autoimmune Avalanche

I'm kind of scared. For the last two months, I've been having increasingly worsening health problems that seem to be accelerating. All the symptoms point to low cortisol. I can't say losing weight while being a sloth all day, except when I manage to get into work, isn't nice, but it does get scary once you reach your pre-child weight and continue to lose it. And forget any form of exertion or even a slow walk on the treadmill if you want to breathe. I can't do anything and I'm miserable. I want to be active again, but if I do, I'll pay severely for it. My thyroid is still functioning, although a little less efficiently than six months ago. Nevertheless, it's not that bad. I shouldn't be going through this, despite the increasing goiter and nodules that I feel pressing on my throat.

My chances with one AID to develop more is increased dramatically. It's not the body part but the immune system gone awry. Once it starts, the immune system decides to look for tissues to attack, thinking they're the enemy. It starts with one, but then it expands. From my understanding, the average number of autoimmune diseases (identified by body tissues) that most people with AID have is 5-6.

I'm afraid I may have three, despite the celiac test coming out negative. (I'd been gluten-free for a week, which is a guaranteed negative result; but I had all the symptoms for years.) Then Hashimoto's. Now, I'm afraid I may have Addison's disease. The next step will be to have my doctor run the test for auto-antibodies. But the rapidly decreasing cortisol levels is a sure sign of trouble for me. The air hunger (the feeling of not getting enough oxygen when I take a deep breath) is the most frustrating.

I'm doing all I can to make it through this, but I feel like a prisoner in my own failing body.