09.27.2019

Sept. 27, 2019 #fibromyalgia and #Lyme news

Sept. 27, 2019 #fibromyalgia and #Lyme news highlights: Why your supplements aren't working; disulfiram as a treatment for chronic Lyme; using scrambler therapy for treatment-resistant neuropathy; organization hacks to combat brain fog and more! | Fed Up with Fatigue

1.

RebuildingWellness.com: 20 reasons why your supplements aren’t working

From the article: “When I recommend a natural remedy or protocol to others in the chronic illness community, it’s not uncommon to hear them say, ‘I’ve already tried that. It didn’t work for me,’ which then opens the door for further investigation.”

2.

Bay Area Lyme Foundation: In search of a cure for Lyme disease | The disulfiram story

From the article: “While not every patient has had as dramatically favorable an outcome … Dr. Liegner remains very impressed by the utility of disulfiram and has not seen such dramatic results with the application of any other agent during his 30 years of practice in treating individuals suffering from chronic Lyme disease and chronic babesiosis.”

3.

Alternative Pain Treatment Directory: New nerve pain therapy [provides] fast, safe, powerful relief

Many of us with fibromyalgia and/or Lyme disease have neuropathy (nerve pain, numbness, tingling, etc.) in our hands and feet. In this article, Dr. Michael J. Cooney discusses the use of scrambler therapy as a non-pharmaceutical therapy for treatment-resistant neuropathy.

4.

LymeDisease.org: FDA approves babesia screening test for donated blood

From the article: “In most cases, the babesia parasite is transmitted to humans through the bite of an infected tick; however, the parasite can also be transmitted through blood transfusions or from mother to fetus during pregnancy. The parasite infects and destroys red blood cells, which can lead to anemia and related life-threatening complications, particularly in the elderly or otherwise immunocompromised patients.”

5.

Trend | Able: The best organization hacks to combat brain fog

Lots of great little nuggets of advice here for those who are struggling to get things done while living with chronic illness!

And an extra…

Slash Gear: Study finds which fasting diet protocol targets chronic inflammation

From the article: “Intermittent fasting protocols that last less than 24 hours may have a beneficial effect for individuals suffering from chronic inflammation, a new study recently published in Cell has found. The research comes out of Mount Sinai, where scientists found that intermittent fasting reduces the number of monocytes circulating in the blood.”

This week on FedUpwithFatigue.com…

Yoga for Chronic Pain book review and an interview with the author

Yoga for Chronic #Pain book review and author interview | Fed Up with Fatigue

I got fired! What would you do?

How many of you guys have ever been fired by a doctor? I received a certified letter in the mail today from one of the doctors who treated me for my previous cerebrospinal fluid (CSF) leak stating I am no longer welcome at his practice because of my “behavior in our practice and interactions with our representatives.” I’ll refer to him henceforth as Dr. Z.

A few weeks ago, my neurosurgeon referred me back to Dr. Z for additional testing because I continue to have daily headaches caused by intracranial hypertension. I had had issues with Dr. Z and his staff in the past (a few examples are mentioned below), but he was my only option for care unless I wanted to drive over an hour to Philly or Baltimore to another medical center.

I called to set up an appointment and was told I needed to send all of my medical records for Dr. Z to review them before they would schedule an appointment even though I was already an established patient. I did as I was asked, and then called them once or twice a week for the next three weeks to follow up to schedule the appointment. On my last call, the receptionist who is generally rude and unhelpful told me Dr. Z would not see me because my latest imaging tests are normal and that he was waiting for a call from my neurosurgeon to discuss my case further.

I responded, “So what do I need to do now? Should I call my neurosurgeon and put some pressure on him to return Dr. Z’s call?”

The receptionist’s response was, “Well, I would never put pressure on your doctor because that would be unethical…”

I was taken aback by her response – so much so that I started laughing and said, “Are you serious? I was using the term ‘pressure’ loosely!!!! I meant should I call him and remind him to call Dr. Z!”

After multiple difficult interactions with this receptionist and issues with Dr. Z as well, I made the decision at that point to contact my neurosurgeon for a referral to another doctor in Philly. I just couldn’t tolerate their BS anymore!

Then I received the letter this morning! I’m dumbfounded! I’ve never cursed, berated or raised my voice to Dr. Z or any of his staff members. I AM one of those patients who tends to ask a lot of questions and advocate for myself when necessary, but I am not rude or demanding in doing so.

To give some background, this is the same doctor who literally had to google which test was best to find my CSF leak, and then copped an attitude with me when I questioned his decision. I guess I hurt his ego!

It’s also the same doctor whose physician’s assistant walked into my hospital room a few minutes before my second blood patch (when I was already extremely anxious) and said he didn’t think I had a CSF leak (even though I had a test PROVING that I had one), and that if the second patch didn’t work, then he’d be referring me to a neurologist for headache management instead of continuing to try to patch the leak.

It’s also the same practice who refused to prescribe medication to manage rebound intracranial hypertension, a known complication of blood patching, which resulted in me blowing my first and second blood patch and having to go to Johns Hopkins a few months later to finally get the leak fixed.

I literally knew more about CSF leaks and how to fix them than these idiots in this office!

Since last fall, I had multiple issues with the receptionists who were by far the most defensive and unhelpful people in any medical office I’ve ever encountered, and that’s saying something given the level of horribleness I’ve experienced within the medical community as a chronic pain patient!

So here’s my question: What would you do in this situation, if anything? Would you respond back to the doctor? Would you leave bad reviews online? Or would you just save your energy and move on? I’m leaning toward the last option at this point. Share your advice in the comments below!

I had already made the decision to never work with Dr. Z again unless it was absolutely necessary so I guess I technically fired him first, but I’m shocked to receive this letter implying that I’m some horribly rude, difficult patient that they can’t manage.

Comments

  1. I agree with your comment of where to send a report of what has transpired under a physician’s care, in these extreme circumstances. The physician is also accountable for all those in his employ as well.

  2. Thank you very much for including Trend-Able.com in your list of resources. I truly appreciate it & your fab website!

  3. I think the problem is that the doctor did not know how to help you and he’d rather avoid and ditch you than admit it. I would leave a bad review online to warn other patients away from him.

  4. Hi, Anyone here tired Advanced TRS, I have MCS/CFS, lots of heavy metals, am tolerating it. Doing muscle testing to see how much my body can handle a day. (which is different daily) I can’t do medications of even most alternative supps ,because of sensitivities, but doing this for few mths now..Have been house bound for over 20yrs, so , I doubt I’m see any improvements for a fews mths yet. It works on negative and positive charged things in the body, all bad things – parisites etc , heavy metals etc are negatively charged. Fingers crossed.

  5. The best thing you can do when faced with health professionals who are less than professional, is to create a report to the college of family physicians and surgeons. It would be beneficial to many of your readers to review how to go about this process. If everyone reported these situations, I think the governing colleges would be quite overwhelmed and in response would have to push out some type of continuing education course on empathy and patient-centered care.

    Doctors don’t like that their patients are becoming so well educated that they can ask the right questions and advocate for themselves. Really, they need to get the hell over it and continue on as a professional that can admit they don’t know it all but are willing to learn. Once the ego is out of the room, I think they’ll be surprised by how much they can learn from patients who are so dedicated to achieving their best care that they’ve learned how to navigate and read the scientific literature.

  6. So, first on a lighter note Elaine is a Difficult Patient episode: https://youtu.be/ZJ2msARQsKU

    However, if this was me, i just can’t stand when things are injust as this certainly is. I would take what youve written here but transpose into a highly professionsl account just to let the doctor and his staff know their behavior has not been one of caring and concern for a patient. Acknowledge the letter they sent but wish them growth in patient understanding and care, or something to that effect. This is the opposite of the doctors and staff that I’ve been able to work with. I hope yiu find a caring office tgat csn help figure out what’s going on.

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