Tag Archives: clinic

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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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Getting an MRI (brain and cervical spine).

If you read no further, take this to heart: MRIs are nothing to worry about, even if you are a panicky person. Feel free to jump to the MRI tips below (in blue) if you are interested in my feedback. Now, to the details of my visit:

I’ve had an MRI before ~ a few years ago for my neck before I was sick. It never occurred to me at the time to research what the scan was like or prepare in any way. They asked me if I was claustrophobic and I said no, but, when they put me in that tube, I opened my eyes, saw how close it was and freaked out. I didn’t freak out outwardly, I just started to get that hammering heart and flush of fear and thought, Oh, maybe I am claustrophobic. It was so close to my face that my breath ricocheted back at me and made it feel like I was in a coffin, buried alive. The test didn’t take long and I talked myself down the same way I do when I get on a plane: Are you going to get off the plane now that they’ve closed the doors? No? Well, then there is absolutely no point in being scared. It’s out of your hands. That’s exactly what I did: Are you going to NOT have the MRI? No? Then deal with the closeness of the tube.

This time around, however, I’ve been sick for a year and I’m a much more anxious person than I used to be, so I thought it would be a more horrible experience. It turns out the machines at the hospital versus the clinic I went to the first time are roomy. And I’d learned my lesson and brought an eye mask.

So, my husband drove me to the hospital and, for the first time in my life, I had to be pushed in a wheelchair to the radiology clinic, which was 100 miles from the parking garage. “Park your pride at home”, says Dr. Bested, so I did. Wheelchairs are good for me. Our MRI tech, Kevin, was amazing. All techs are not created equal. He answered my questions about the contrast (which I opted not to get because, as my husband said, if it can go wrong, it will go wrong with me), he offered me the old scanner with music or the new scanner without music, but with the tube much further from your face (I chose the latter after looking at it ~ it was bright and spacious). Kevin assured me that people make the techs stop the scan all the time, so not to be embarrassed if that happened. He put a blanket over my feet, a towel under my neck, offered to loosen my headphones (which I SHOULD have taken him up on ~ do whatever you can to be comfortable). He talked to me in between every scan and allowed me to move and adjust. The scan itself was no problem. The worst part was how hot it got under my back and, because I have fever episodes as part of my illness, it started to freak me out that I was having a reaction or a meltdown or a fever or whatever. Kevin said, “Pretend it is a heating pad on a massage table and you are getting a wonderful massage.” Perfect. But turn that heating pad down, for god’s sake!

Turns out the new fancy machine was having some problems, giving “error” messages (my husband said to Kevin, I told you: if it can go wrong, it will with her! I said to Kevin, That magnet just couldn’t handle my big brain ~ the activity threw it off its game :-)), so I had to be moved to the old machine after all. I had to wait another hour in between scans and Kevin gave me a juice and a blanket. Angel! The second round was rough. Kevin was gone and the new tech didn’t communicate clearly at all. I like to know when there is a pause between the scans and how long the next one is going to be and be warned when a particularly loud part is coming. None of those things happened with the new tech. It also turns out cervical spine scans are worse than brain scans. They put you in a different head cradle which isn’t wide enough for the thick, noise-cancelling headphones (or my head isn’t big enough to clear the top of it), so I was given flimsy airplane-ish headphones instead. These didn’t let me hear the music, didn’t block out the sirens and hammering and, to make matters worse, one of my ear plugs was falling out. The noise was BY FAR the worst aspect of this scan. It was like the day I tried to go to the cinema and had to leave because the sound system caused my brain to melt and I burst into tears. So I meditated on blocking my ear canals and taking myself out of the situation. I actually fell asleep, believe it or not. Just for a moment or two. Enough to jerk myself awake and probably mess up the picture quality a little.

4.5 hours later, I was able to leave and went home to bed. I’m happy it’s done because I am not doing well the last few days. I’m in a whole lot of pain. If I could get rid of my headache and neck/back pain, I would be a different person. My eyes are sunken from not sleeping and my mouth is pinched from grimacing. I look so much older. I look like an older, tortured version of myself.

Once again, family, I am so sorry to those of you that I am not emailing back because I’m writing the blog instead, but this keeps everyone up to date and I can only manage one computer task a day. The phone is a mountain I try to avoid climbing for the most part, so I apologise to those of you I haven’t called back, also. Tomorrow, I’m back to the hospital for my sleep study results. Joy.

So, here are my tips/warnings to make an MRI easy:

1. Wear clothes with no metal! Otherwise you have to take off everything and wear a hospital gown and freeze for the majority of the time.

2. If you are cold/heat sensitive, dress appropriately. It is cold in the hospital, but can get hot in the tube.

3. Don’t be hungry or thirsty going in to the appointment because my 2 hour visit turned into 4.5 hours.

4. Suck on a lozenge before you go in to the MRI so you don’t have any sort of tickle in your throat that will cause you to cough or move.

5. Make sure the ear plugs are in properly. One of mine was falling out when they started my cervical spine scan and I think I have hearing damage on that side, swear to god.

6. Make sure the headphones are on your ears properly for the same reason as the ear plugs. Nevermind the music, that’s not the concern~ they are very important for protection from the noise.

7. If you have a painful back/neck or fibromyalgia, make sure the blankets underneath you don’t have ridges and bumps. You have to lie still on those for a long time and they can start to feel like torture. Also, make sure your neck, back and head are in the best position possible to not cause pain and seizing up before the scan starts. Some techs don’t give you a chance to adjust in between pictures.

8. Put the eye mask on before they put the coil helmet thing over your face. Put the eye mask on and, after that, DO NOT move your head or open your eyes. This isn’t like peaking through your fingers at a scary movie where you’re not looking but you actually are ~ do not look, it’s as simple as that. You do not want to know how close the face mask is to your face, it will only cause anxiety and claustrophobia. Close your eyes: You are meditating in some nice place with your eye shade on, that’s all you know. If you open your eyes, it breaks the spell and, if you adjust your head or arch your neck, your nose will touch the thing over your face and you’ll realise how close it is and it will break the spell!

9. Meditate in your head, drown out the noise. I found that if I pretended that the noise was the machine curing my disease, I started to love the MRI. I pretended I was in the futuristic pod from Aliens/Hunger Games/Prometheus ~ one of those movies ~ and the robotic arms were fixing me, which made me be happy for the noise. Fix me, tube!

10. Don’t fall asleep if you’re a twitcher or a gasper-of-breath because it causes you to move and might affect the pictures.

11. If the tube under you gets very hot (and it does ~ it can make you freak out a little), pretend it is a warm pad on a massage table and you are relaxed and safe.

12. Know that if you panic and have to make them stop, it is okay ~ it happens ALL THE TIME.

13. If you are cold, ask for a blanket.

14. If you are in pain and can take a pain killer to make lying on a hard surface easier, do it. If you are able to take a Xanax or something, do it.

15. If you are noise-sensitive, don’t get an MRI if you have the choice.

16. Remind yourself that people have MRIs done constantly. No big deal.

I am grateful for my brain. I am actually hoping that they find something wrong in the brain MRI ~ I would be happy to have any other diagnosis but the one I have ~ but, if they don’t (and they won’t), I am grateful for my healthy, over-active, analytic, curious, obsessive, controlling, detail-oriented, micro-managing brain. Even if all your neurotransmitters are fucked up and you NEVER STOP HURTING, I still love you, Brain. Thank you for keeping me alive.

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Oh, by the way…

Thanks to those of you that helped vote for the Vancouver clinic, but it turns out they are only taking B.C. residents. Of course I still hope they win the contest, I’m just upset that there is an ME expert in my backyard and I can’t see her. There is NO ONE anywhere near me in the States.

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PLEASE, please vote for $150K in funding for the new chronic fatigue clinic in Vancouver!!

PLEASE HELP THIS CLINIC!

As soon as this new clinic in Vancouver is open, I intend to go there. It is in the running for up to $150,000 in funding for medical equipment from an Aviva Contest. All it needs is VOTES. The Aviva site asks for you to register in order to vote. All they ask for is your email address, a password and then they send you a link to click on. That’s it. You can also register through Facebook. I think you can vote every day for 15 days. Please, please help.

Here is some info about the clinic:

http://www.vancouversun.com/health/Clinic+specialize+complex+chronic+conditions/6922031/story.html

http://www.bcwomens.ca/Services/HealthServices/complex-chronic-disease-clinic/default.htm

Here is where you go to vote:

http://www.avivacommunityfund.org/ideas/acf13624

Here is the Facebook page:

https://www.facebook.com/AvivaCCDC?ref=hl