Tag Archives: supplements

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An update for everyone…

I am still feeling stronger than I was a month and a half ago, but still so much worse than two and a half months ago. My energy level is holding steady. I’m able to walk 2,000 – 3,000 steps and have about 12 usable hours each day. I’m able to do house chores, work on the computer, watch TV and read. I’ve walked seven laps of our house the last two days and been able to play a little bit with the dogs. The last time I got hit by stronger pain and fatigue was when I cooked a meal that had me standing in the kitchen for an hour, chopping veg etc. That took its toll.

My pain level has also been steady since the Worst Headache. My muscles ache, my joints are stiff, my neck is always in pain, my head always hurts to some degree, but, in the last two weeks, I have not been immobilised, I’ve not been reduced to tears of helplessness. However, I do keep resorting to Solpadeine (acetaminophen/codeine). Not a lot ~ a quarter to a half of a dose to take the edge off ~ but, I’m aware that the longer chronic pain goes untreated by long-term pharmaceutical therapy (ie: drugs that change brain chemistry, like antidepressants or anticonvulsants), the harder it is to get on top of the problem. So, I have to stop the Solpadeine and start experimenting with long-term solutions.

My sleep is still poor. “Unhygienic”, as the doctors like to say. Sleep hygiene is very important! I have switched to the “nasal pillows” with the CPAP. It’s the mask that shoots straight up your nostrils as opposed to covering your nose or covering your nose AND mouth. It has a much lower profile, fewer parts, more minimal headgear, so it makes sleeping on my side much, much easier. But, if/when you open your mouth, a hollowing wind pours out. The air going up your nose comes straight out your mouth rather than going down your throat. You can feel your uvula flapping and it makes you kind of choke. I keep waiting for a colony of bats to fly out of my mouth… or a high-speed freight train. It’s like Charlize Theron sucking the soul out of those girls in that awful Huntsmen film… Or, even better, the dude in The Green Mile sucking the bad stuff out of me!! Anyway, with the nasal pillows, I have been taping my mouth closed with athletic tape. Yes, it’s true. It worked wonderfully for the first few hours, but, what you don’t know is, when you put tape over your mouth and go to sleep, you DROOL. A lot. Or maybe it’s the humidified water coming through the nose and condensing at the lips… Either way, it wakes you up and, when you pull the tape off, on top of hurting your delicate facial skin, you dribble and your mouth is all wet. Gross. They have chinstraps to keep your mouth closed, but, honestly, I can’t take one more strap around my head. Someone suggested I wear swimming goggles to stop my eyes from being dry and burny in the morning, so imagine this: Zeo headband, mouth guard, swimming goggles, CPAP mask, chinstrap, and tape over my mouth… Really?

Physically, my eyes are swollen and bloodshot (I think it is actually the pressurised air drying my eyes from behind ~ from inside ~ because there is no leak on my mask blowing up into my eyes), inside my nose is raw, ears are plugged and my throat is sore. All from the CPAP. Other than that, I’m having IBS issues again. I think it is because of the iron supplement and also because I have been adding back foods I haven’t had in months. Which brings me to my diet…

I am in the middle of a very long elimination diet. It’s been ten weeks since I eliminated all legumes, grains (except oats), dairy, starchy veg, fatty meat (kinda), eggs and tomatoes. And I’ve been gluten-free for seven months. So far, I have “challenged” myself with dairy, eggs, rice, tomatoes and sweet potatoes. I think rice, tomatoes and sweet potatoes are okay, but I am going to continue to eliminate dairy and eggs. After eating dairy, I became extremely exhausted ~ that indescribable inability to move or speak… So, I am going to re-challenge dairy and eggs down the road. Corn is next to be added in (oh dear lord, I can’t wait for popcorn) and then beans…

I’m back to acupuncture and using the light box, but still haven’t started Lyrica and I’m still waiting on supplements (besides iron and vitamin D and B). After talking to Z, my best friend here in Seattle, my goal is to be able to celebrate a teeny, tiny Thanksgiving. We spend every year at Z and her husband’s house and now they have a new baby. I was going to tell them that I’m not doing holidays this year, but she said, “What if we brought the mountain to Mohammad? We could come to your house and only stay as long as you’re up for it. Maybe an hour, maybe the whole afternoon and early evening…” I’m scared because I know I will want to put a bunch of effort into it ~ cook, clean the house, interact, talk, laugh, play games etc. ~ but, if I can hold myself back and relax and just think of it as a visit as opposed to THANKSGIVING, I should be okay. It made me want to cry that she would want to keep the holiday spark aglow and cart the whole family to our house. Good friends stick by you, even in housebound sickness.

I became sick exactly one year ago this week. I left work exactly six months ago last Friday. I will never stop trying to get better, I will never stop looking for my next career, I will never be okay or content with this new life, but I think maybe I’ve reached acceptance. And, for that, I am grateful. Emotionally, I’m calm. I have a lot of fear, but I’m not depressed, anxious or despairing. This is it. One day at a time.

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So, this is it.

Today I went for a follow up with the infectious disease doctor that I saw in May before I had to leave my job. I wanted to ask him about a few things that have been rattling around in my brain, namely: Could I have caught something from my dogs (through squirrels or birds or whatever)? Does he not think I have some sort of virus since I have a daily sore throat, hoarseness and low grade fever? What does he think about antivirals to treat Epstein-Barr virus (EBV) and/or cytomegalovirus (HCMV) and/or HHV6? I also ran Guillaine-Barre and bacterial endocarditis (SBE) past him and asked him about vaccines.

He is a wonderful, knowledgeable doctor and he took the time to explain things in detail to me, but I’ll sum it up by saying I am grasping at straws. He said, point blank: “You have chronic fatigue syndrome and, from here on out, you should work on treating the symptoms. Patients can get better, but they never get back to where they were before being sick.” It was very final. It left me feeling empty. This is it. I’ve spent a year researching, reading, going to doctors, getting tests, asking anyone and everyone for help and advice and ideas… It’s time to move on. This is it. It’s long term and I need to move on with treating my symptoms and stop searching searching searching…

Regarding the other stuff, the ID doctor said they had ruled out active viruses and, in his opinion, mostly ruled out autoimmune problems, so, what is left is allergy — immune activation/allergic response. His experience (and what the medical community knows) is, a virus triggers CFS but then the virus is long gone and I’m left with the body’s ongoing response that causes the symptoms. So, antivirals will do no good and antibiotics definitely won’t. He is the 4th doctor to tell me there is no way they would throw broad-spectrum antibiotics at a patient without any clear target – especially in CFS patients where side effects can really cause hell. I have tested positive to past infection or exposure to EBV, which most of us will (and I had this test done years ago with the same result, so I know this didn’t cause me to get sick, although you can get reactivated EBV) and he said I am negative for HCMV, which many people aren’t.

He doesn’t think there is anything that the dogs could have given to me, I would be paralysed and hospitalized if I had Guillian-Barre and I’d be dead if I had SBE (he said, before antibiotics, SBE was one of the few infections that was 100% fatal. People might survive rabies, for example, but not endocarditis). Finally, he said my husband should get a flu shot ASAP because flu would be “very bad for you” and that I should never get any vaccines until I’m over 65 and then reassess. Wow.

I also had a follow-up with the Good Doctor. She is the one who will be helping me with symptom management going forward. Since I spent three weeks “washing out”, I am going to add in one thing at a time, very carefully. We’re starting with foods, moving to supplements, then we’ll tackle other things down the road, like heavy metal testing, hormone testing, Chinese herbs for Gu Syndrome, even medical marijuana… Anything!

I added back in rice last week and, yesterday, I added back eggs. I’m pretty sure I had a reaction to the egg, so I’m going to steer clear of them for now. I was feeling almost great (yes, I said great. Yesterday afternoon was really the best I’d felt in months) and, within half an hour of eating the egg, I had a raging headache. And then I had allergy-type symptoms in my nose: runny, stuffy, swelly etc. (although, that is still with me today and could just be me ~ or maybe I’m finally getting the cold that’s been threatening for a year.) Thursday, I add back dairy, then corn, then tomatoes, then legumes…other grains… If/when I want to start the Lyrica, I do it three days after the last add-in and three days before the next.

She also had the results of my stool sample (how long did that take? Three months?). No parasites. Inflammation not as bad as she thought it would be. Yeast levels not good and, even though I take a too-expensive probiotic every day, the good bacteria in my gut are nonexistent. She said “this is actually quite concerning”, so I have a new probiotic to order and, after that, she is going to start me on herbal supplements to combat the yeast. I’m staying on the ferrous gluconate (watch out, iron causes constipation – who knew?! I thought it was from coming off the pill) and, down the road, we’ll add magnesium and zinc and the other supplements.

Gratitude today is given to last week’s headache: You were SO ALL-CONSUMING AND PAINFUL that I never gave one thought to my first period in nine months.

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What’s gone wrong in your system?

I got the results of my sleep study test yesterday. I spend about 15% of my night in deep and REM sleep and these should be around 20%. Also, I have a form of sleep apnea. There are three different kinds (I can’t remember the names): the most severe kind is when you stop breathing for a full ten seconds or more ~ I don’t have this. The second kind is when your throat relaxes to the point that you are not getting enough air, but it is a partial restriction ~ not full apnea. And the last kind is when this throat closing causes your brain to wake up to rectify the situation. I have the latter two. He said my brain is waking up an average of 49 times an hour. This has me in an aroused, wake state a lot, obviously, and it also causes my sleep cycles to be interrupted, so, even if 15% of my sleep is deep, it’s broken up throughout the night, which isn’t as restorative. So, I get to use a CPAP (Continuous Positive Airway Pressure) machine! Seriously, I’m going to sleep with the Zeo headband, a mouth guard and a face mask? Wtf? That’s a pretty sight. But, please god, let it help me feel marginally better.

He also said, “Have you had your ferritin level checked?” “Yes, two months ago. It’s in your computer.” He looked it up: “Oh, it’s low. You should be on a supplement ~ that’ll help you feel less fatigued.”

Now, let me tell you how much this pisses me off. The crappy chronic fatigue clinic ordered this test along with zinc (which is also low). The results came back two months ago and nobody called to tell me what it meant. My regular GP saw the result of the ferritin, also, and didn’t tell me to do anything about it. Mine is low and I don’t have a period. If I had a period, it would be far lower, the sleep doctor said. So, I could have had TWO MONTHS OF SUPPLEMENTS UNDER MY BELT BY NOW IF SOMEONE HAD JUST REVIEWED THE RESULTS AND CALLED ME. I am raging mad! This has happened at every single step along the way this year. Nobody communicates with the patient. Actually, the front desk people do ~ schedulers etc. ~ they’ve been pretty good. And maybe one or two nurses. But is there a doctor out there that says, “I am testing you for X, Y, Z and, when I get the results, I will call you and explain them. I don’t think you have A, B, C and this is why:…”?? How dare they! I don’t know why the ferritin has me all riled up. It’s just that he put me on a heavy-duty supplement (ferrous gluconate 648mg/day), so obviously I need it and it might make a difference. Actually, the reason I’m so annoyed is this has happened so often and can have more serious consequences. I won’t get into the details, but my husband had a test that the doctor said was negative, but we have access to our results online, so, I looked at the results and googled the test and did the math and said, “uuummm, I think this is positive, not negative.” He emailed the doctor and, sure enough: “Oh, yes, sorry, it is positive. We need to treat you for that.” Say what?! I know they’re only human and I know they’re very busy and I know the whole healthcare system is a mess and maybe the doctors are just as frustrated as we are, but what if we didn’t have access to our records? I never would have found the mistake. And that’s just one of countless mistakes. Please, everyone, be your own best advocates. Call for your test results, request copies of every test you get done, review them yourself and point out anything that looks odd. And, pay attention to any result that is in the low or high range of “normal”! Normal has never been normal for me. My TSH was in the low range of normal for years as two giant goiters grew and strangled my thyroid until it wasn’t working anymore. My ferritin was technically in the “normal” range, but the doctor said it was too low. Et cetera, et cetera, blah blah blah.

Ok, on to other stuff. WordPress shows me what internet searches led people to my blog. Yesterday, 6 out of 14 searches were for MRI info, so it makes me really happy that I expended the energy to write my tips. I hope it helped someone out there.

My wash-out period ended on Tuesday, but I haven’t added anything back in because I felt like such shite, I didn’t think I’d be able to distinguish my disease symptoms from any symptoms new foods caused. Maybe I will add rice today. The Good Doctor says we are looking for “stark sensitivities, so worsening of mood, fatigue, energy, pain.” This is really hard. I was feeling pretty good last week and then, without warning, I was a mess. If I had added rice in that day, would I think rice had caused it?

I’m back to using the light box and I’m starting acupuncture again next week. I’m going to try all the supplements again, as well as melatonin, Lyrica, and the Chinese herbs. I just don’t know in what order… I guess I have to add all the eliminated foods back in before I start anything else to gauge my reactions… This is so tedious and time-consuming. I used to love Thanksgiving and Christmas and now I don’t get to celebrate at all. I can’t eat most of the food, I have no energy to do special preparations and, even if I did, there’s no point in planning something when the activity and/or socialising will just cause me to crash. Wow, this life sucks.

On a lighter note, have I mentioned how grateful I am for my husband? He drives me to my appointments, takes the dogs to the park, fixes our roof, landscapes the garden, hoovers, cooks dinner, sprays IcyHot on my back and, above all, keeps a positive attitude.

Good times gone, and you missed them
What’s gone wrong in your system?
Things they bounce like a Spalding
What’d you think, did you miss your calling?

It’s so free, this kind of feeling
It’s like life, it’s so appealing
When you’ve got so much to say
It’s called gratitude, and that’s right

Good times gone, but you feed it
Hate’s grown strong, you feel you need it
Just one thing, do you know you?
What you think that the world owes you?

What’s gonna set you free?
Look inside and you’ll see:
When you’ve got so much to say
It’s called gratitude, and that’s right

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Diet Day 36… No supplements Day 5

I have been strictly gluten-free now for over six months. Not a grain of gluten, not a crumb of bread, not a noodle of pasta, not a crust of pizza, not a spoonful of couscous, not a whiff of malt, nothing. I feel no difference whatsoever except a deep longing for tortellini. I haven’t broken the autoimmune diet that the Good Doctor put me on over a month ago except I still cheat with oats and sugar (actual and fake sugar), but that’s it. And I probably eat more condiments than she would like (Veganaise, salad dressing etc.). And I probably eat more red meat and oil-soaked chicken than she would like (I ordered a steak and grilled chicken from a local restaurant last night and split them with my husband. Lots of greasy meat. YUM). But, seriously, there are only so many salads a girl can eat. Oh, and I feel no difference whatsoever except a deep longing for popcorn.

This is the fifth day of no supplements. I have been taking vitamins, just no borage oil, alpha lipoic acid etc. I decided to give myself a week off to see if they were contributing to my headache. No such luck so far. My head threatens to explode all day, every day. Yesterday I took 500mg of tylenol and a half a Solpadeine (250mg of tylenol and some codeine). They didn’t seem to help my head and my breathing was tight all day, so now I am paranoid that the Solpadeine, like the Norco, depresses my respiration. I must figure out a pain killer option ASAP.

So, I’ll start back on all the supplements on Tuesday. I’ll do it until the end of the year. That is my commitment. Definitely until Thanksgiving. And I’ll continue this diet until the end of time, what do I care? At least the diet doesn’t cause a rash or my chest to close or my tongue to swell… I don’t think it does, anyway. It probably contributes to the depression, though!

When do I start the Chinese Herbs? He says it is a six month to a year commitment… Ugh.

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LDN Day 23… Do I keep going with the LDN?

Like I said, I debated for a while about whether I would be honest in this blog about just how bad it gets. I’m trying to chronicle the good times, the hopeful times, the funny times, as well as the bad times. And I’m still kind of holding back on the bad times because I’m towing the line between diary and public entertainment. I don’t want to depress or scare the readers that know me, but I also don’t want to misrepresent what this illness does to me.

Last night, I skipped all of the supplements after lunch. I skipped food, too. I just went to bed and felt crappy until about 11pm and then tried to sleep. I did take the LDN. I did some more research online and there are so many people saying, “Stick with it! The side effects go away, it gets better.”

My night was awful. I woke up with what I thought for a split second was paralysis in my left leg. Once I rolled over and the tingling started, I realised it was just total and complete bloodlessness. Then I woke up again with absolutely no blood in both my hands. It was the oddest feeling; I could not move the fingers at all. I sat up and shook them for minutes and went back to sleep. I woke up twice from the crippling headache that had struck around 6pm the previous night. I woke up at 1:30am shaking and trembling so much that I got up and checked my blood sugar (it was fine) and then decided to take 1mg of melatonin. This is a big deal for me. I have a fear of combining drugs ~ even “benign” ones like melatonin. I think I’ve only taken 1mg once in the past and it was split into two doses and I wasn’t taking LDN at the time. I like to be able to “monitor” what drugs do to me, so drugs taken at night are the worst. Well, the rest of the night was like something out of “Jacob’s Ladder”. I want to do the overnight sleep study just so someone can tell me what is going on with me in the night. Every time I woke, I was in a different place in the bed, using a different pillow, in a different position, head tweaked a different direction, jaw clamped down painfully. Every time I woke, I was either too cold or burning so hot that I would take my temperature, unable to believe I wasn’t dangerously feverish (never above 99.7 degrees). I had night sweats again. I had nightmarish, vivid dreams. In all of them I was sick and drugged. I kept going into lucid dreaming, where I consciously knew I was asleep and wanted to wake up, but couldn’t ~ I was too drugged, too sick. It doesn’t help that I’m reading those Girl With the Dragon Tattoo books, so all my dreaming imagery is pretty gruesome. I’ll probably have to put those books away for a while ~ until my subconscious isn’t such a lunatic. I have spent 4 months meditating and relaxing ~ my conscious self doesn’t feel that tortured ~ so is this the id rearing its ugly head at night? Freud, you there?

This morning, I’m okay. I feel like I’ve been put through the wars and I’m eating Tylenol for breakfast, but I’m okay. I only got about 4 or 5 hours sleep and tonight I think I might try the melatonin again. It’s either that or stop taking the low-dose naltrexone. Or start taking it during the day. I don’t really want to do the daytime LDN. I feel like, if I’m gonna do it, I should do it when I’m meant to do it for the best result. And, if I stop taking it… well, it’s like the one-armed bandits in Vegas: maybe this time will be the winner. Maybe this day will be the day the good kicks in.

I really will get to the laundry today.

Today’s Moment of Gratitude: NATURE: for the colours, smells, sizes, variations, animals, majesty, resilience, inspiration, and freedom… even gratitude for the bugs –the ones inside me. Little fuckers.