Monday, March 5, 2012

How Not To Die and Other Useful Information

Whoa, look at all those people looking at ME.

I just learned how to check statistics on my blog. About time, eh? Blame the fog brain.

What I learned, aside from the fact that you're reading this from the US, UK, Germany, Russia, Netherlands, Canada, Australia, France, Ukraine and Brazil, is that the most viewed post is the one that mentions Nortriptyline, Butterbur and Feverfew, and that the searches that bring people here are often for information on herbs and medications.

I'm so sorry! It's not that good a blog for solid medical information. I'm just another patient, ricocheting between clinics and agencies, trying to find anything that helps for me and my also-M.E.-having kid. I started the blog when a friend said my stories were so bizarre I should share them. So if anything this is maybe just a good place for rants on the bizarre underworld we enter when we become chronically ill.

I don't have any medical expertise. After a few years of illness and research I can share my personal experiences and a few good links, though, so here's the important information I do know, and some of it might help you not die. It has helped me not die.


Give This To Your Doctor

In fact, give this to all the doctors you saw since you got sick, who shuffled you from one GP or specialist to another. What they all need to know is contained in the International Consensus Criteria. It's a good starting place for understanding what little is known, about what's up with M.E..


Psych Pharmaceuticals

I can tell you from my own personal experience and from friends' hard stories as well: antidepressants are NOT good for us people with M.E. or Fibromyalgia. You can try them---I did it mostly to please the doctors so we could get on with some real medicine. It's not worth it. Nortriptyline, Amitriptyline, Prozac, forget it. Horrible experience.  Prozac made my spatial perception all wonky, and the 'tryptiline twins made me intolerably tense.

Why do they prescribe psych meds anyhow, for a condition that's physical? I'll tell you why. Ju$t bcau$ thy £ik€ to h£p. Psych meds are very big business and somehow, they're always discovering new applications for their use.

So just beware, if you think you might try these. Adverse reactions can make folks suicidal. Most doctors don't know how extremely sensitive M.E. patients are to all pharmaceuticals, so they can easily start you on too high a dosage. And besides dosage, the choice of med is guesswork. They'll try you on one, ramp you up to higher doses til it's obvious it won't work, taper you off, then start you on another, until they stumble on something that helps or you opt out.

If you're depressed, you might want to try antidepressants. If you have a neuro-immune disease, there's no reason to expect antidepressants to help. Many people who are depressed get misdiagnosed with neuro-immune disease as there's some symptom cross-over, and then when the antidepressants work for them, the brilliant doctors and researchers say "Hey look, anti-depressants are helpful in cases of chronic fatigue syndrome!" When really what they had was a patient with depression.

The common wisdom on the difference is ---and sorry I don't recall where I picked this up so I can't give credit--- if you're depressed, you don't feel like doing anything, but when you get out and do something you feel better. Conversely, if you have M.E., you long to get out and do things so much that you push yourself, you go out, you do things and wham, you feel worse.



Herbs and Supplements

Sadly, butterbur and feverfew didn't help me either, nor did a long list of herbs I tried. But at least they aren't likely to hurt, in normal dosages, so maybe try them. They're supposed to help with migraines.

Here are some other herbal recommendations. I've tried all but the olive leaf, oil of oregano and cat's claw, and they didn't help. I'm not going to try olive leaf because it can lower blood pressure and mine, like many people's with M.E., is already low.

My former acupuncturist mixed up some Chinese Traditional herbs that helped, but I never could get him to write down the prescription so when I moved away I lost that resource. Goji berries seem to be a good thing for me. Also ginger. I'm trying DHEA now, and haven't noticed any improvement. At least it's cheap.

I'm supposed to try d-ribose and that stuff is pricey. I tried about one sixth the recommended dose and got no benefit from it but that's probably because I was skimping. No being a cheap-skate with those herbs and supplements, and of course your insurance probably won't pay for them.

Cannabis may be one of the best herbs for M.E. and Fibro. It has frequently been reported helpful for MS patients, and many other NID sufferers find that it's helpful, being as it's both an anti-inflammatory as reported by National Geographic in June '08 and analgesic as confirmed in a recent survey of PubMed articles. , but it's not legal everywhere, so fighting prohibition becomes one more struggle to add to our list, along with fighting for biomedical research on M.E and other NIDs.


I think magnesium maybe helps me, and maybe CoQ10, but you know, it's really hard to tell, since this illness flares and fluctuates constantly. For more and better ideas on herbs and supplements, probably the best thing I can do is refer you to Dr. Sarah Myhill's wiki because she is a doctor, and has much useful information.

When you can handle a bath without drowning, throw in some epsom salts and that's another way to up your magnesium.



Anesthesia: Handle With Care!

The anesthesiologist attending my routine, out-patient procedure promised me he wasn't going to put me under. He was only going to give me a very small amount, to relax me. Did I mention wham, earlier? Well once again, wham.

I warned him that M.E. patients are highly sensitive and he said "yeah, yeah..." and they were lucky to revive me. Went into the light, saw the loved ones, didn't get a t-shirt but I remember exactly how difficult it was to get back into my body and take on again all of its pain.

At least now I know how easy dying is. But it might not be what you really want. So please print out and use the information at the following links. Show it to your anesthesiologist or dentist, and hope to be believed.

NJCFSA info includes Wallet Card re: Anesthesia

Myhill on Anesthetics

Also, please note that because of the heart problems associated with M.E., we should not have the local anesthetics used in dentistry that contain adrenaline (or as it's called in the US, epinephrine). They add epinephrine into the stuff called Novocaine because it's a vasoconstrictor: it shrinks the blood vessels to keep the drug in one small area around the tooth being worked on.

'Caine's with no epi work just as well, but as the anesthetic travels off into the rest of your body, it becomes weaker around the tooth, so you'll need a few more shots of it during a long procedure. The nice thing is, with all that anesthetic in your blood, you may feel fairly pain-free for a while after dentistry.

There's a great article on the no-epi thing in the JADA but they just made it subscribers only, so tell your dentist to get it from here:

Postural orthostatic tachycardia syndrome: Dental treatment considerations


CBT and GET, STFU

There are lots of links I can grab on the dangers of exercise, and the dangers of consigning M.E. patients to psychiatrists, too.

If you do get well from CBT and GET, then once again you were probably misdiagnosed and what you had might have been depression. M.E. patients are harmed by exercise, and only mildly helped by psychological support, much as a cancer patient might be helped by good counseling.

Dr. Speedy's got some links for you here and that's a good place to start.


Acupuncture

It's the one thing that has worked best for me, of everything I've tried. I don't know if it has kept me from dying but it sure has kept me from feeling like I'm fixin' to die.

If you are looking for an acupuncturist, and you're an M.E. or Fibro patient, then you are probably looking for an affordable acupuncturist. Good news: one of the doctors who has helped me the most, works in a community acupuncture clinic, and there's a network of coop community clinics all over the U.S., so if you're in the states just search their map and you'll find someone who works on a sliding scale.

If you can't find a clinic near you through that link, then find an acupuncturist nearby, get a recommendation from a friend, and ask the doc if they'll work on a sliding scale. Many will if you just ask.

More good news: the other doctor who helped me most is both an MD and an acupuncturist, so my sessions with her are covered by my insurance. Maybe you can luck out that way, too. It's becoming more common for MDs to have training in various therapies.


Co-Morbidities


It sounds so morbid, "co-morbid," but it just means other illnesses you've got along with the main one(s). Finding them and getting them treated, can help.

For example, some people with M.E. and/or Fibro have celiac disease. There's a test for it. If you come out positive, you cut the gluten from your diet. That's not easy (I was relieved when we came out negative for celiac) but once you've been gluten-free for a while you could feel much better.

Another common co-morbidity is yeast or fungal infection. Again, you can be tested. My doc didn't even bother testing for this one but going by my high score on a fungus questionnaire Rx'd me a course of antifungals. Thought I was going to die. Watch out for the Herxheimer reaction if you take these things. Also, as with all medications, remember our sensitivity and ask your doctor to start with a lower-than-normal dose.

She put me on 200 mg Fluconazole daily, and after one dose I clung to my bed while the room spun and all my stomach's contents made a swift departure. I called and told her I was going off the stuff and fortunately, she prevailed. She told me it could be a Herx' reaction, keep taking it, but okay to cut back to half the dose.

The next few days were a shade less hideous, and after a couple of weeks the upturn began. See, the Herx' happened because there was fungus stored in my system slowly increasing my illness, and the antifungal released it all into my bloodstream suddenly, so I got way sicker suddenly. Then, as the fungal stuff cleared out of me, my health improved markedly.

Sadly, fungus wasn't the only thing wrong with me. I still have M.E.. But I'm much better, on the whole, without the fungus. Just be sure if you're herxing, you give it a while and you drink a ton of water to flush out that garbage.

There are lots of other possible co-morbidities, more than I know or could list if I did know them, but the ICC linked way above, under "Give This To Your Doctor," gives some ideas of other things to test for, as does Dr. Byron Hyde's slim volume, Missed Diagnoses: Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. With luck you've got something in your individual mix that's treatable, so you can improve.



Contagious? Helping Other People Not Die


Editing to add this: the cause of M.E. is at this time unknown, but there are many indications that there may be a contagious factor. Whether it's a viral trigger or a retrovirus or what, there might be something we need to be careful not to spread around.

As reported in the thoroughly-researched Osler's Web by Hillary Johnson, there have been numerous cluster outbreaks recorded. These include outbreaks among schoolchildren, the members of a symphony orchestra, and nursing staff at a hospital, so it seems the disease may be communicable through casual contact.

That's why I'd suggest we should behave as if we've got something contagious and take any precautions we can, not to infect others through anything from donating blood to careless sneezing.

This is something lots of patients don't want to publicise as they're afraid of being treated more as pariahs than we already are, but I feel it would be irresponsible not to say it. If I caught this thing from someone, I wish they had taken better precautions. If there's a chance I could pass it along, I'd rather be aware and try not to.



Blog and Forum

After the searches for meds and herbs, the next most popular search that brought me readers was for blogs or forums. I've stopped being much of a forum-dweller when internal drama shook up a forum or two, and as for blogs, I read them when I can. One of these days I'll figure out how to embed the links to my favorites over there to the right side.

For the time being, though, I can recommend both the blog and the forum hosted by Dr. Jamie Deckoff-Jones. X Rx Blog and Forums might not be a life-and-death solution, but then again, the way we search for information on our much-misunderstood diseases and long for the company of people who "get it," sometimes it does feel like life and death.

Note that Dr. Deckoff-Jones is among the patients who have tried antiretrovirals for M.E. --- she tells all about that in her blog --- but do note her warning NOT to try this at home. Seriously, not without the guidance of a doctor who has experience with antiretrovirals, meaning, probably an AIDS doc. There you go: that's one more way not to die.

Outside of forums, many of us have managed to build up a great community of Facebook NID friends whose knowledge and good humour keep me alive, so that's what I've been doing instead of hanging out at forums, but I probably wouldn't have found all of those wonderful people were it not for the forums we once frequented together.

I'm planning to try to frequent the X Rx Forum for a backup, and the fun of the occasional chat room blither, though that's usually too hard for me to follow. It did used to be some fun to hit a chat room when some big news came out. Chat chat crash.

Speaking of blither, that's about what this post has become and as it's a no-edit day, that's it for now. There was something else I meant to say... there always is. I hope what I've managed to hammer out is more helpful to those of you who came here looking for something more medical, less political and social. I'll try to pass on more useful links as I encounter them.


I leave you with Camper van Beethoven's cover of O Death, in hopes he'll spare you his labours.




I lock their jaws so they can't talk,
Stiffen their legs so they can't walk,
Close their eyes so they can't see;
The chill you feel, it comes from me.


(Sounds more like an NID than death to me, but I plan on sticking around anyhow.)

20 comments:

  1. Love your explanation of the effects of anesthesia and glad you're back! Your writing flows and I can follow.

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  2. Thank you! "I can follow," is a tremendous compliment, coming, as I suspect it does, from a fellow ME-sufferer. There's so much I want to read, but can't follow. I am honored.

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  3. I appreciate your suggestion of a community acupuncture clinic. Do you find that acupuncture helps with other NID symptoms besides pain? Thanks and thanks for all the other good tips too.

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  4. I get lower pain levels and more sustained energy from acupuncture, I even wake without pain often when I get treatments regularly, but it's different for different people. Didn't work for my kid at all, but that might be because it's often different for children and she was about 14 when she tried it.

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  5. Thanks for the post, Creek :) My hubby and I used to be in fits about this joke we made up once I was in the hospital:

    "But doctor, will those anti-depressants help at all?"
    "Oh, they will certainly be of help. Just not to you - to me!"

    They made me worse, but that's of course not the doctor's problem, it's mine. Such a comfortable system!

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    1. I know so true, it's all the patient's responsibility for health not the doctors. And it's all symptom management not find the root cause....

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  6. This is a great post, thanks. The part about anaesthesia was particularly interesting, as both a dentistry student and a CFS sufferer. I will certainly be asking for adrenaline-free anaesthetic when we practise Locals on each other, and more importantly will make sure that my patients receive appropriate anaesthesia if I ever have a patient with a similar disorder. The bit about psych meds made me smile ;) X

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  7. I like your blog, Creek. Good article.

    Microcosm: 'I warned ... said "yeah, yeah..." ... lucky to revive me.'

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  8. Grave dancing Tunes:
    http://www.youtube.com/watch?v=qHDdqubE7zQ

    http://www.youtube.com/watch?v=rxt_GHYmolI&feature=related

    So the light said kindly get the hell out, your sentence isn't up...but in a NICE way, right?

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  9. More info on Cannabis being effective - any personal or person not me ancetodal information? I have heard not curative but palliative and as soon as try to stop, symptoms are worse so it's a long term relationship commitment if you're going that way.

    Also, should add this info:
    http://www.hfme.org/researchvitamincandme.htm

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  10. Hey Creek

    Great post cheers, have bookmarked the links too.

    fly

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  11. To the 4:48 Anonymous of 6 March: I haven't been able to find any great articles to link on cannabis' efficacy. What I find either has poor info about cannabis, poor info about M.E., or both. But anecdotal evidence suggests that moderate use of high-cbd strains is indeed palliative.

    As for curative, who knows: cannabis does decrease inflammation and the damage seen in autopsies of M.E. patients is related to inflammation in the central nervous system so the logical surmise would be that reducing inflammation (perhaps with high-cbd strains) would actually not just relieve perceived symptoms but if not completely cure then reduce the root cause of come symptoms, yeah?

    Of course, that's all under-educated conjecture on my part. And the studies we need are unlikely to happen, first of all of course because biomedical M.E. research is under-funded, and secondly because funding is more likely to be pent on studies of pharmaceuticals or derivatives with money-making potential than on whole-plant herbal medicines.

    When I went looking for articles I found such a lot of misinformation. One article claimed that "medical marijuana" referred only to smoked plant, for example, when in fact a patient can vapourise it, or use a tincture under the tongue or in water, or ingest oils in capsules or in food or lozenges, or make a drink out of whole fresh plant if available --- there are lots of ways to ingest it; and just as different methods work best for different people, different strains work best for different people. One person might find sativa-dominant strains most helpful, and another does best with indica. High CBD content is said to be a good bet, though, for anyone dealing with inflammatory illness.

    Regarding CBD vs THS: one supposed drawback of cannabis use in Fibro and M.E. patients is reduced cognitive function, but a strain with a higher percentage of CBD to THC can actually improve cognitive function, reportedly. Perhaps this is partly just because if you decrease a person's pain you're going to increase their ability to think, by removing the distraction of pain. On the other hand, it also makes sense that (unless you're getting way too much THC) using something that decreases inflammation of the brain, would in fact improve brain function. Measurably, one would expect. So where are the studies?

    Caveat: these are complex illnesses with no proven treatment or known cure, and perhaps varied causes in different patients. What helps one person might not help another.

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  12. What a great blog post! I love the way you write! Easy to follow, & lots of similar experiences between us. Like you, I'm suffering with M.E. and also the mother of a teenage daughter with (thankfully milder) M.E.
    I would add that with cymbalta, widely advertised for fibro, be really careful. Tried it twice, and nearly died both times. Guess it helps some to get FDA approval, but as you rightly mentioned, we are almost always super sensitive to meds.
    Even lyrica gives me issues, little known side effects like loss of bladder control, even at a fairly low dose..
    Would suggest that all patients start only one new med or supplement at a time, start low dose, and research all possible side effects. You'd really think our docs would know the side effects, but often they don't. Or only know the most common ones.
    In many ways, we have to become our own best caregivers, and really listen to our bodies.
    Take care!

    Ash

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  13. Greetings to readers from Finland, Belgium and Moldova. Making connections with people all over the world: that's a wonderful gift I never would have imagined receiving from such an awful illness. I'm so grateful we have the internet. I can't imagine how awful it must have been to be chronically ill a couple of decades ago.

    Ash, that's an excellent suggestion: one new med, supplement or treatment at a time, give it some time to work, and try to take notes as you go along. Sometimes I haven't had enough energy to take notes, and I've regretted it later when I was scratching my head and asking, "Now what was that thing that made me feel like I was hit by a truck?"

    Sadly we do have to be our own best caregivers, and it's especially hard for those of us (and this is true of so many) who are more accustomed to taking care of others, volunteering, and giving. Sometimes I almost have to pretend I'm somebody else, to get myself to take care of myself!

    Sorry your daughter is also sick but I hope she'll be one of those lucky ones who gets better as she reaches adulthood. Best to you both.

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  14. Great post, interesting about the medical marijuana and inflammation. I didn't know that that was the premise behind it. Good to know... I guess. :)

    It's fascinating to see who is reading your blog isn't it..love stats. Once I had a huge percentage of russians..I think they were lost.

    Hope you're having a good day.

    Cheers.

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  15. Katrina Berne, Ph.D.04 April, 2012

    Thanks for a wonderful, helpful blog.

    ME is definitely not the same as depression! However, antidepressants can help with chronic illness in several ways. Many people with chronic illness are depressed because of symptoms, unpredictability, isolation, being misunderstood, losses and limitations. It is also possible that neurotransmitters are dysregulated. SSRIs and SNRIs can relieve mood swings, a physiological symptom experienced by some. Small amount of tricyclics (TCAs) can help with sleep. Some of them relieve pain. I'm not promoting their use and certainly advise caution - starting with very low doses and increasing gradually if tolerated - but simply saying they can be useful in symptom treatment when used judiciously.

    Regarding cluster outbreaks, we should consider the possibility of exposure to a common agent (e.g., a viral illness going around) as well as person-to-person contagion. I think the former is a more likely explanation for cluster outbreaks.

    The one-treatment-at-a-time approach does give us an idea of whether something will help or not. However, if many things are tried together, they may have a synergistic effect whereas the same therapies tried individually may have no effect. I know docs who favor each of these approaches. There is nothing simple about this illness!

    Let's hope for some breakthroughs - soon.

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    1. Thank you for your input, Katrina. Having just heard from yet another patient who had a terrible cardiac reaction to an antidepressant, however, I will reiterate my statement that these obviously must be tried by ME patients only with the utmost caution. Because of cross-diagnoses I'll say Fibro, Lyme and CFS patients as well. I appreciate that you too mention using small amounts and with caution, but I would suggest that we try any and everything else, first.

      Certainly, the symptoms, unpredictability, misunderstanding, losses and limitations of our illnesses can cause secondary depression. So let's address directly those problems, not try plastering a psych drug bandage over them. My symptoms have been reduced by everything from antivirals and antifungals to acupuncture and cannabis. Misunderstanding is addressed by educating physicians and the public. Isolation is addressed by that education too, which will help our families and friends stick by us, as well as by support groups and interacting with other patients online. It's great to talk with people who really get it.

      I too think it quite likely that cluster outbreaks may be caused by a viral illness, but of course we're talking about a viral illness that causes or triggers chronic, long-term illness, not an H1N1 type of outbreak that sweeps through and is gone. Something, whether a virus, a retrovirus or a toxin, is what the CDC ought to have been looking for in Incline Village decades ago, and what many researchers are still looking for today. If more resources are devoted to biomedical research than to the psych research that has failed us for decades, we can get closer, faster, to stemming pandemic.

      May is Awareness Month for NIDs, including ME. Let's all act to bring about the breakthroughs in awareness, that will bring breakthroughs in funding, that will bring research, to bring scientific understanding, to bring real treatments.

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  16. Here's my story:
    I had chronic fatigue syndrome (or whatever you want to call it) for 2.5 years. The last 6 months of which I was taking 12.5mg Nortriptyline each evening to help me get to sleep. At Easter 2009 I ran out of the Nortriptyline pills, and, being a public holiday, couldn't go back to my doctor to get any more. I didn't take the pills on Saturday evening, or Sunday evening. I woke up on the Easter Monday well. I no longer had CFS. I bounced out of bed, and mad a list of a bunch of jobs around the house that needed doing and then did them. I went on an overnight hike with one of my children the next weekend. I've been CFS-free ever since.

    Funny thing is, weeks later I was cleaning out my bedside drawer, and found the pills I thought I had run out of. I don't know exactly how it happened, or whether the Nortriptyline really was a factor, but one thing I do know: One day I had CFS, and the next I didn't.

    Cheers,
    Carl.

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    1. Interesting, Carl, and it sure does make you wonder.

      There are some cases of spontaneous recovery where it was clear that the patient was doing nothing different at all, and yet they got suddenly better.

      What THAT makes me wonder is, how many "treatments" out there get the credit for a cure that was actually just another one of those spontaneous recoveries?

      Somebody should do a study... (she says with wry irony)

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