How to make impossible health decisions

 Plant, desk lamp, laptop on desk. Text: Who gets to decide your life? Alicia Butcher Ehrhardt

GATHER ALL YE FACTORS

I’m trying very hard to make a rational decision on an important medical consideration with a brain that is being kept from thinking by the drug supposedly required to keep my new stents from causing me problems themselves.*

Why? Because the side effects are not only bad, but getting worse daily.

THE PROBLEM

What’s at stake?

Possibly life vs. being a thinking being.

What is a clear statement of the problem?

The drug clopidogrel (generic Plavix) has side effects which are making this writer’s life impossible to live: I can’t think, ergo I can’t write. And since writing is the only thing left in my life that I can do, this is a very big deal. Pain levels are hugely larger: I have acquired a chronic headache, and my pain control meds for CFS don’t work properly. Taking extra over-the-counter drugs is a problem for bleeding and long-term liver damage, and they are not really helping.

Timing considerations?

They want me to take the clopidogrel for 10 more months at a minimum.

I haven’t had enough energy + brainpower to write fiction since April 8; I started the drug in question (clopidogrel) on March 23 when the previous anti-platelet drug sent me to the ER with a huge BP spike (the BP had been increasing, hockey stick exponentially, for several days at that point).

Complicating factors

Chronic health conditions already in place: ME/CFS, twenty-seven years duration; severely limited mobility, due to botched back surgery ten years ago.

Clopidogrel has the side effect, among others, of bleeding; being on it increases my risk of stroke; since I’m also taking Celebrex and OTC NSAIDS, the risks are additive.

Due to the CFS, my body is highly intolerant of most meds; they started two BP meds and a cholesterol lowering statin at the same time as the Effient (anti-platelet); the side effects were ferocious. I dumped them all, except for the Effient, within three weeks of getting the stents.

When switched to clopidogrel, it took about two weeks for the side effects to build (typical for this drug), and three weeks for me to figure that out (typical for this brain on these drugs).

Alternatives?

Effient – which raised my blood pressure to high enough levels for me to end up at the ER five weeks after starting it; and Brillinta – which has its own whole host of potential side effects; the doctor said her patients on it complain fiercely of the side effect of shortness of breath.

NOTE: I have not yet tried Brillinta; would probably face a similar decision in whatever time it takes for its side effects to become intolerable.

Fish oil has some anti-platelet effect; I have taken it with no problem in the past.

Resources for making the decision:

Doctor’s recommendations – never stop clopidogrel for any reason. No concern about or help with side effects.

Online scientific papers exploring the drug and the possible complications both of taking it AND of not taking it.

Severely limited human brain – having zombie side effects from said clopidogrel while trying to make a decision.

Vague information in papers of the effectiveness – and dose – of fish oil.

Previous experience making difficult decisions:

While I was doing my PhD in Nuclear Engineering (plasma physics) at the U. Wisconsin-Madison, the only woman in my cohort, I would tell myself that I was under such stress it was impossible to make good decisions; that making a good decision on whether to quit the program and do something else with my life was too important to be made unless I did it well; and that I would have to be finished with the PhD before it would be possible for me to make a decision NOT to finish it. (With the complication that I planned to apply to the astronaut program, and KNEW NASA would never consider me if I dropped out of a PhD program.)

I am happy I finished. I got my chance at NASA, though one of my eyes missed their cutoff, and they had candidates without that limitation to choose from so did not make exceptions. But I made it to Houston, almost made the cutoff, and will always treasure that.

Difficult MEDICAL decision: I was 24. I started running. I developed bursitis in my right hip. Doctors at University of Wisconsin hospitals wanted to operate on my hip. That sounded crazy to me, so I got myself out of there, found an orthopedist who specialized in sports medicine (yeah, me, the total non-athlete), explained I had just started ‘running.’ He told me no guarantees, but built me orthotics – and that was all I needed for running for many years.

Difficult MEDICAL decision: After back surgery in 2007, I couldn’t walk properly, and had a fair amount of pain. The same surgeons who made this possible wanted to operate again, would not guarantee any improvement, only ‘keeping things from deteriorating further,’ and I walked out of there, learned to deal with the pain with yoga and stretching and strengthening exercises (THEN lost weight). In 2014, another round of the same – two more orthopedic surgeons – with the exact same words: ‘less than 50% chance of walking properly, but prevent further deterioration.’ Have not taken them up on their ludicrous offer; if I’m going to put myself through the hell of another 6-12 months recovering from back surgery, it’s going to be for someone who knows what he/she is doing enough to give me MUCH better odds of walking again. I don’t want even more scar tissue back there when I find the right surgeon. I’m not necessarily saying these are GOOD decisions, but they were certainly the right decision for THOSE doctors. I try again periodically, but there is little energy to work with.


THE GOAL

Simple: I wanted to go off the anti-platelet drugs, and I wanted to know how much risk I would assume by doing so, if such were known.

This is what is meant by ‘Informed consent.’

[NOTE: this is not my job, calculating risks, but it freaked the cardiologist out even to be asked. You would have thought I was intending to jump out of a plane with no parachute, and I was warned of immediate massive heart attacks and told anecdotes about same in people who were so foolish as to stop their anti-platelet ‘therapy’ and ended up immediately back in the hospital.]


THE DECISION PROCESS

*NOTE: I started this post when I had not made the decisions I’m talking about. WITH ZOMBIE BRAIN.

On inspection, I find it awkward and rough, and have decided NOT to change what I wrote precisely because that is the way most of us have to face these decisions: not in the comfort of hindsight, but right in the middle of the fray, with everything going on, with side effects rampant, and the doctor’s ‘advice’ ringing in our ears – and OFTEN without any actual DATA. The ‘recommendations’ created by a panel of medical experts are only as useful as the specificity they include; if they don’t take into account your gender, age, previous medical condition, and the particular side effects, they are USELESS for you in making an INFORMED DECISION.

So what did I do to acquire all the information to make the best decision?

I read. Probably a hundred scientific papers on:

  • Short- and long-term dual anti-platelet therapy (DAPT)
  • Anti-platelet drugs
  • Drug-eluting stents (DES), especially the second generation ones such as the ones I’ve had implanted
  • Discontinuation reasons and side effects

I also read about:

  • Cardiac rehab
  • Heart attacks in women and differences (heartily recommend Heart Sisters blog)

I consulted my online groups:

  • CFS Support group
  • CFS Exercise with a heart rate monitor group
  • and comments on my blog posts

I read the journals I have been maintaining since stent installation – I have over 60,000 of my own words recorded, side effects and observations and BP readings and drug history. (Okay – 10% of that is the automatic time stamp from Scrivener – everything has one.)

It was done with ZOMBIE BRAIN; my notes are erratic, and all over the place, when I want to find something I thought I had made a copy of.

Most researchers did NOT study the cohort of people who dropped out of their studies on the effectiveness of these drugs and stents. I find that medical malpractice: they had data, didn’t analyze it and/or didn’t publish it.

Once patterns started emerging, I was more focused, and could look for specific papers.

A specific link led the way: Medtronic, in 2013, announced that its new second-generation stent had ‘No Stent Thrombosis Seen When Plavix and Aspirin Stopped Early.‘ They actually STUDIED the people who stopped taking the drug for various reasons; out of a 5000 people study, ONE THOUSAND did so. The conclusion – not much difference in results, as long as the DAPT was maintained for the first month (during which it was hypothesized that the stents hadn’t finished their new inner layer of epithelial cells in the cases that had problems – or were not placed correctly – or some such).


THE DECISION

My decision – not to take clopidogrel any more, NOR ANY OTHER ANTI-PLATELET DRUG, after I’d already taken Effient for 5 weeks and clopidogrel for a month after that:

April 25, 2017 at 11:21 PM
Nervous – who wouldn’t be.
TAKING FISH OIL 1200 MG. CAPSULE WITH NIGHT PILLS, INCLUDING BABY ASPIRIN, BUT NOT CLOPIDOGREL.

[Note: fish oil has mild anti-platelet and BP lowering effects – I’ve taken it before with no problems; don’t remember why I stopped. Sympathetic magic?]

From what I had found and read, I expected a small – if any – additional risk factor. In the papers which were against taking this or any risks, the few numbers available often indicated a tiny ABSOLUTE risk increment (1.2% to 1.8%) blown up to look horrible by being quoted, based on the risks of taking the stuff, as a FIFTY PERCENT larger risk [RELATIVE risk: 1.2% plus 50%(1.2%) = 1.8% risk IS a 50% larger risk – the statistics are correct and insignificant and inflammatory – cf. How to Lie with Statistics, a wonderful little book for non-scientists and non-mathematicians.]

I assumed that risk knowingly, and in consultation with my life partner.


THE ANTICLIMAX (of course)

AFTER I had made my agonized (and much discussed with spouse) decision, I found the paper I SHOULD have been pointed to in the manufacturer’s information on the stents in the family of second generation DES called XIENCE, and by the doctors:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3706013/
ISRN Cardiol. 2013; 2013: 748736.
Published online 2013 Jun 23. doi:  10.1155/2013/748736
PMCID: PMC3706013
Risk Factors for Coronary Drug-Eluting Stent Thrombosis: Influence of Procedural, Patient, Lesion, and Stent Related Factors and Dual Antiplatelet Therapy
Krishnankutty Sudhir, 1 , 2 ,* James B. Hermiller, 3 Joanne M. Ferguson, 1 and Charles A. Simonton 1

NOTE THAT THE VERY TITLE MAKES IT UNLIKELY TO COME UP IN CASUAL SEARCHES. Title doesn’t even mention the brand of stents, nor does the title imply there will be far-reaching recommendations at the end about DAPT.

The relevant parts of the conclusions (ST is stent thrombosis, literally, the stent clogging up, a very rare but potentially fatal complication – see Sec. 8 of paper for details):

9. Conclusions
ST represents a major complication of DES implants, usually leading to either cardiac death or MI. Preclinical studies have shown that inflammation, parastrut fibrin, and endothelial coverage vary between stents, and more biocompatible polymers in newer DES may have improved endothelial coverage and thus less ST. The risk of ST in an individual patient is related to numerous factors that include patient and lesion complexity, suboptimal stent deployment, adherence to and duration of dual antiplatelet therapy, and stent type and design (see Table 1). There is emerging evidence that second-generation stents, particularly XIENCE V, have significantly lower ST rates compared to first generation stents. Various components of the newer DES… may all contribute synergistically to the preclinical and clinical evidence of enhanced safety. …Treatment with DAPT for a year is currently the standard of care for DES, but more potent antiplatelet agents such as prasugrel and ticagrelor may be beneficial in high-risk patients. DAPT interruption appears safe beyond 30 days in standard risk patients and beyond 6 months in an all-comers population that received the XIENCE V DES. The optimal duration of DAPT for DES is unknown; recent data indicate that short-term therapy may well be sufficient for real-world patients treated with XIENCE, a finding that should be systematically confirmed in large-scale randomized controlled trials.

Weasel wording in various places reminds us that these things – stents AND DAPT – are very big business (in 2011, Plavix was the second largest drug in the WORLD, bringing in 9 BILLION dollars for its creator; even now that generics are available, these are still very remunerative drugs), and researchers have to mind their ps and qs until recommendations change for the medical boards – if they ever do.

Bleeding risk due to DAPT not mentioned in this paper, but it is, of course, larger with clopidogrel than without. And one of the main problems of long-term DAPT.


THE AFTERMATH

I have NOT changed my decision, but finding this paper – on the very XIENCE stents I have in my arteries – really took a lot of the residual stress (stress is bad for cardiac patients; stress kills) out of my life.

I’m not saying I will not have an ‘adverse effect.’ No one can guarantee that. I’m saying that my INCREASED risk is negligible to zero, and now doesn’t include the component of BLEEDING that is the bane of long-term DAPT, and since I’m also terrified of strokes, and believe I may be at an increase risk of those because of my pain meds, that has ALSO reduced my stress.

For normal people, clopidogrel is out of their systems in 5.5 days. I’m not normal (my liver seems to process things very slowly, possibly why I have so many side effects), but it’s been that long now, and the first thing to go was the back pain, and the exaggeratedly painful flares after exercise (my EIGHT pitiful minutes of cardiac rehab three times a week set off days of unmanageable pain). I still haven’t heard back from the doctor’s office about my request for pain med prescriptions and advice on OTC amount limits. My next appointment is scheduled in three months. I guess I could call back, but maybe I’ll just wait until July. My husband knows what I did.

The brain may be coming back (this latter part of this post is far more coherent, I think) – I had a short period yesterday in which I was able to read my notes about where I am in Chapters 22 and 23 of Pride’s Children: NETHERWORLD, and sketch out a few dialogue exchanges. Rough when I reread them, possibly usable. I hope I was not on clopidogrel long enough to do actual damage.

This is part of me working through my Post-Traumatic Stress – writing and talking about things, and resuming control of my life where possible.

I am STILL grateful to be alive. I am STILL not happy with any of the process.

I would have willingly assumed a reasonable additional risk, as the side effects were escalating, and I had no desire to go through every anti-platelet drug in their arsenal to try the more esoteric ones. But I have the very strong feeling I have assumed NONE.


My thanks to Stencil for providing the ability – and a nice clean interface – to make the graphics I use for many of these posts. I’m using a free account, but would use them in a flash if I needed more than the 10 free images a month.


Keep me stress-free – recommend my fiction.

I couldn’t put a tenth of what I found into this post; please ask any questions you have.

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21 thoughts on “How to make impossible health decisions

  1. marianallen

    ~dancing~ I can tell you’re already better! Lady, your brain at its worst is better than most people’s at their best! I’m reminded of my best friend, Jane. She just had cancer surgery and elected NOT to do the chemo they were pushing. She had her retired-scientist brother to help her, but she’s also thorough and methodical and did her research. All the scans of the surrounding tissue came out negative, so she elected for frequent PET scans to detect any “hot spots” rather than poisoning her entire system “just in case,” even though that’s what all the doctors recommended. She didn’t make that decision lightly, but by informing herself, as you did. I believe your having MADE the decision relieved enough stress for your body to react more quickly and positively than it otherwise would have. Go, you!

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    1. Alicia Butcher Ehrhardt Post author

      We do the best we can. The doctors push what they think is ‘safest’ and’protocol’ and ‘recommendations from the board,’ so they have done their putative job. I think they don’t actually do the most important part: TELLING you your odds, and respecting your decisions, and supporting you even when you disagree with them, but that’s me.

      Other people just want to trust. I wonder what they do when ‘trust’ gets you the kind of side effects I’ve been battling – just switch allegiance to someone else they can ‘trust’?

      I still can’t write.

      I hope I’m getting there.

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  2. J.M. Ney-Grimm

    Dear Alicia, I continue to be so impressed with your persistent and methodical and reasoned progress navigating through a challenging medical obstacle course while drugs steal a significant portions of your innate abilities and resources. As I’ve said before, like several upthread, it’s not right that you’ve had to do this, but you are winning this fight. I’ve been praying for you, and will continue to pray that you heal and recover.

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    1. Alicia Butcher Ehrhardt Post author

      Thanks for your continued support, Jessica. I don’t think I could do this without friends like you.

      As I wrote somewhere else this morning, it has been the more terrifying because I can observe myself, document what is going on, and not quite get back the capacity I value – to be able to create fiction.

      I miss that feeling, short-lived though it was every day, of having my brain back.

      I pray with you that the damage is temporary, that the decisions I’ve made – which might have not been possible, and which were scary to take – are the right ones for getting myself back. I’m literally out of options except Time.

      My CFS friends tell me I need to give it much more time. I hope that’s not true.

      ‘Persistent and methodical’ – what a nice way to say stubborn. That I am.

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  3. joey

    Well that’s a LOT of information. Hindsight is such an enlightening bastard.
    I’m glad you’re feeling your brain fog lifting and getting some writing done. Fish oil is good for me — at least my skin and brain. I’ve taken it for about 6 years.

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  4. Janna G. Noelle

    Wishing you well. You’ve clearly put a lot of thought into this decision. Please just to sure to seek immediate help at the first sign of any adverse effect should it come to that (and hopefully it won’t).

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    1. Alicia Butcher Ehrhardt Post author

      I will; it’s just nice to know I haven’t put myself at more risk than reasonable, in case something happens.

      It’s just that there is a HUGE area of ‘non-compliance’ with ‘doctor’s orders’ that makes a lot more sense when you go through something like this – they are not connected with patients’ reality, and exaggerating risks is not the way to improve this.

      Also, switching from evidence to anecdotes is the sign of a very weak argument, in my mind: you can always find a case that tests (the old-fashioned word ‘prooves’ means test, not what we consider proof in the modern world, IIRC – you would know) the rule, but that doesn’t mean you should run your life by the exceptions. I now realize how little ‘informed’ most ‘consent’ is, which is fine for emergencies (but still a joke when you sign those papers), but should not be allowed to continue in the light of day and time to reason.

      That’s what we have reason for, making good choices. The system did NOT allow me good choices. I’ve had to force them every step of the way. And frankly, I’m the least qualified person to do that, from my non-existent pool of energy.

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  5. Jennifer

    I really like the way you approached this, Alicia, although I wish it wasn’t necessary for you to have to go through all of this in order to make an informed decision. Part of what you write reminds me of a book I recently read: ‘The Prince at the Ruined Tower’ by Michael D. Lockshin, M.D., subtitled ‘Time, Uncertainty and Chronic Illness’. The key word? Uncertainty. Dr Lockshin points out that not everything in medicine is certain, and paths through chronic illness differ for individuals. If you have an opportunity, you might be interested in reading his thoughts.
    I send you many virtual hugs, and (if I could) some energy and physical strength. You are not alone.

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    1. Alicia Butcher Ehrhardt Post author

      It was necessary – for me – because I ASKED point blank for the risks, so I could decide for myself, and there was no attempt to satisfy my reasonable question with anything like the information I found. Instead, it was a knee-jerk you can’t do that! reaction, based on nothing.

      The second generation stents should be proud they are that good, and the manufacturers could easily insist that they not be treated in the recommendations in a pool with the first generation DES and the bare metal stents, which DID have higher problem rates (and are still used in appropriate cases).

      I’m a civilian. I keep telling everyone ‘I’m not that kind of doctor.’

      But I put a lot of work into this, even though I don’t understand all the little details, and my husband has the statistics to understand them when we need to.

      Don’t even get me started on some of the other weasel practices – it just gets me mad.

      Meanwhile, I feel ungrateful for complaining!

      The Chinese have a system: if you save someone’s life, you are responsible for that person for the rest of that life. I’m not getting that.

      I don’t want to be argumentative, but I don’t see how I could possibly call it other than lies. Alternative facts?

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      1. Jennifer

        I understand why you would feel ungrateful, but I don’t think you should feel ungrateful. Your life is important. What works for (some, perhaps even most people) isn’t always appropriate for you. It’s important that medical professionals acknowledge this, even if it makes them uncomfortable. It’s your life.

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        1. Alicia Butcher Ehrhardt Post author

          I feel what I feel – then I try to deal with that, but not by disavowing the feelings.

          Things happen; you do the best you can. Then later there may be time to reflect – and to keep those feelings from festering.

          I AM grateful. I value being alive. But for those of us with chronic illnesses, ‘being alive’ is not that easy, and we don’t appreciate it getting even harder. It’s not a small matter to lose the widow’s mite.

          I’m probably unique in some of the things I’ve written about lately – what an odd combination! – but it would be nice not to have anything to write about. AND to be able to write fiction. Soothing, calming, conflicted fiction.

          Liked by 1 person

  6. Pamela Spichiger

    Alicia, your comments are very informed and thought out very well. I can feel the pain in your writing about not being able to write on your novel and I hurt for you. That being said,the difference from beginning and end of article is prominent. You basically are healing yourself with research and common sense from the time you had the life saving stents put in to the questioning of the drugs after your initial shock of thinking of death being so close.
    I believe you and I have had ME/CFS about the same amount of time. ( around 30 years for me) after finding out that this is what I had,at least I could say, “well it is not going to kill me”. Then along the way I have had 8 spinal surgeries and some others thrown in for good measure. Last May when my Pancreas Necrotyzed I was so very close to death and spent 75 days in the hospital. At times I was very depressed ,thinking I just could not fight any longer. Then the time came when life was so wonderful again,no matter how much pain I had to endure,different medicines the doctor threw at me,and the realization that this world is so wonderful I could not imagine leaving my husband and family. I think you still need more time to come to that spot in your healing. I truly believe it will be there for you. The progress I have seen in your postings is right on track. The body,I believe,heals quicker than the mind. Keep up the searching for answers to your med questions,do what feels right in your heart and the time will come when you will be back to our ” normal” ME/CFS bodies. Bless you. Pamela

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    1. Alicia Butcher Ehrhardt Post author

      I’m so sorry you had such a rough year – I’m very glad you made it, but I can only imagine what that was like! I was going nuts from 9 days.

      You’re right that I haven’t hit the good spot yet. I’m working on it – the posts help me process. I was surprised to see how disorganized my brain had become in a few short weeks on a powerful drug.

      I hadn’t thought about healing the body faster – I haven’t been allowed to do that until a week ago when I took back that right (after carefully investigating – I, too, want to be here for my husband and family).

      Thanks for leaving such a thoughtful comment, and for your support. Yes, we’ve had CFS the same amount of time. You get a feel for it, for what you can do, and then something rips up your little kingdom, and it’s not that easy getting your balance back.

      I can’t not be glad I have the stents – I am. I tried to cooperate – a huge effort for me. But when I did what I was told, I was the one in the wave tank getting knocked over again and again, with no help.

      If it were necessary – and I were convinced of that – I would have kept trying the newer drugs, hoping to either find one I could tolerate for a year, or getting a month out of each so the total coverage was extended. I can put up with quite a lot of pain, and if the confusion had to be tolerated, I would have tolerated it.

      I’m not okay with what I found: I could have been off the drugs sooner, and the research has all been done AND PUBLISHED. And they were telling me things that are not true. I don’t get that. I don’t understand why. I don’t understand that kind of attitude.

      I’m trying to let that go now that I’m aware of it. I am not a crusader, and I’m certainly not going to try to educate doctors. But, as I tell my daughter, it is not good practice to do things to writers – we have a tendency not to remain quiet about it!

      I’m okay – but what about other people needlessly stressed? If I were well, I’d tackle the problem; I’m not well. So I just write – and post – and try to get back to my tiny life and writing.

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  7. thoughtsnlifeblog

    Omg… i had no idea
    Mum is on clopidogrel after her bypass because she is allergic to asprin. But she has complained about any headaches as such. How did you realise your brain is being impacted and how long have u been on clopidogrel? My mum has been on it since 2012.. but we are naughty we dont take daily..

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    1. Alicia Butcher Ehrhardt Post author

      If you’re not taking it properly, you might as well not take it. Not taking it daily is not naughty: it is either something she shouldn’t take at all, or she should take it daily – in the right dose for her. Unfortunately it comes in only one dose. You need REAL advice on the matter, not mine.

      I was on it a month, after the Effient sent me to the ER.

      It was easy to see my brain wasn’t working. I’m a novelist, working on my second book, and I can’t write. No writer’s block – I’m sitting here waiting for my brain to click on every day as it did before the drugs – and it doesn’t happen.

      I don’t know how long you have to take anti-platelet drugs by a bypass – my husband’s still on clopidogrel from a bypass 18 years ago (or whenever they started using Plavix). He has no side effects.

      If she’s having side effects that MAY be the drug in HER case, start logging them. Check the online lists – does she have other side effects that might be the same drug. I did a LOT of research – and my particular kind of stents have a body of research I could examine. My decision was not for other people; it was for me – I was illustrating the process, which in my case worked out the way I wanted (I hope – but I’m not too worried).

      You have to do your due diligence, or have a doctor who does. Best of luck to you two.

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  8. Nita Thatcher

    I hope this works out for you and brings you back to where you were before the medication side effects. I hope too that you can now rest and recover more quickly from the whole process. I am wondering if they started you on very low doses of the medications and then gradually raised the dose, as seems to work much better for those of us with ME/CFS, or if they immediately put you on a “regular” dose?

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