Treatment

More than tired: CFS/ME

August 3, 2016

Myalgic encephalomyelitis (ME) or Chronic Fatigue Syndrome…….

The cause of CFS is unknown, but many researchers and doctors are finding links to viruses and immune system weakness. It certainly affects men, but most of the ME patients are women. This leads one to speculate hormones play a part.

The idea that we are just tired is a bit misleading. Many of us do lie in bed or on the couch all day, but it does not bring relief. We are rarely sleeping. Sleep eludes us. Part of CFS/ME is the inability to have a restorative sleep, and most of us suffer from insomnia. Beyond simply being “tired,” this overwhelming fatigue is like having the flu all the time. It includes brain fog, muscle weakness, low blood pressure, aches and pains, and a myriad other “odd” symptoms. In my case it also includes hormonal imbalance, adrenal issues, and hypothyroidism. Years of exhaustion and neurological problems can lead to despair.

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Although I do nap (chemically induced) and do drink coffee (yikes, I know, very bad) these coping methods do not rejuvenate me or provide restoration for long. These were my only coping methods in the beginning. An induced nap, a painkiller, and then a caffeine boost just take the edge off so to speak and provide a few moments of clarity to help make a decision, carry out a task, or converse with someone. Then it was back to alone time on the couch, vegging out to TV.  Thankfully my physicians discovered the root causes of my situation and means to treating them. It will take a few more years to fully treat and build up my endurance again, but at least much progress has been made and a light is shining ahead of me.

With lots of testing it was discovered that I suffer from active viruses. I harbour a heavy viral load that is suppressing my immune system and wreaking havoc with my nervous system. Epstein-Barr virus, HHV-1 and HHV-6, as well as Coxsackie. Testing also showed an infection of mycoplasma, a rather mysterious pathogen that is difficult to detect and treat. Gulf War Syndrome has been related to mycoplasma infection.

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I also suffer from estrogen dominance, which leads to multiple problems throughout the body. Hormonal imbalance seems to be a precursor to CFS/ME for many women. Hypothyroidism was detected as well.

My throat was always sore. Even now after years of treatment it becomes swollen and red within an hour of a stressful event.

And sadly my adrenals are pumping out tons of cortisol and not enough DHEA. As mentioned in previous posts, adrenal issues were detected because my midback hurt, I was grinding my teeth, had jaw pain, craved salt, and was exhausted in the mornings but wired at night. This symptom spectrum led to testing and sure enough the adrenals are stressed and require support.

And so the experimenting began. There is no set protocol for CFS/ME. Because I suffered from other diseases, all of which tax the body, we understood that my fatigue and pain would be difficult to alleviate.

For the first three years we treated all the underlying infections, this is still ongoing. As the infections died, my organs were better able to function. We also had to kill the viruses related to CFS/ME. In the beginning we tried:

Valtrex. This is a prescription antiviral. I took this faithfully every day with minimal effect, but this medication has worked for others and is worth a try. This “smurf” pill has side effects you should research before taking.

valtrex

Then I tried Transfer Factors (specifically created colostrum capsules to boost the immune response to viruses). Again, after thousands of dollars on this “supplement” I did not see any relief or change in viral load. This does not mean others won’t have success with it. But, I do not think it was worth the expense for me.

Next I tried colloidal silver. Topically it helped with a staph infection that developed around my central line site, but ingested orally it did nothing for the viruses.

Delving into the Traditional Chinese Medicine realm provided different methods for dealing with the viruses and immune suppression. I added reishi mushroom capsules, lysine, lemon balm, and resveratrol. Bingo! Within six weeks I was walking almost every day. I could think more clearly. I could rebound from exertion and stress better. Do not get me wrong. I am not running marathons or working full time. But to do laundry and cook supper and walk the dog all on the same day is remarkable. I plan to continue with these supplements and supports.

For my thyroid, Iodoral has proven beneficial. No synthetic prescriptions have been needed yet. I also take thyroid support from Lorna Vanderhaege from time to time. My thyroid tests are now always normal.

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Adrenal supports are mentioned in previous blog posts.

And to balance my hormones I take an estro-detox. The primary ingredient comes from broccoli. Estrogen dominance leads to terrible conditions and even cognitive issues. Some studies link it to breast cancer and infertility. The estro-detox capsules “eat up” excess estrogen; especially the “fake” estrogen from environmental factors (plastics, beauty products).

As for sleep, I have found aides that help a lot. Each person must experiment in this area and much trial and error ensues.

Obviously I am not a doctor, just a patient who is trying to be an active partner in my healing process. If you suffer from similar illnesses you may want to research the aforementioned medications and supplements. Many functional medicine doctors are now leaning towards naturopathic remedies because pharmaceuticals alone don’t cut it. I blend mainstream medicine with naturopathic remedies with success. Of course I wouldn’t try anything without first consulting with my doctors. You need to be aware of counter indications and the side effects of each.

How are you fighting CFS/ME? What medications, supplements, herbs, or techniques are working for you? Please share in the comments section.

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2 Comments

  • Reply tamara August 4, 2016 at 8:28 am

    Love it! What helps me most is to take charge of my own health. I made myself sick and I’m going to heal myself, this is what I TRULY believe in. Ofc it’s always good to consult docs or naturopaths, however I know myself best and I know what makes me feel good or not. I came to the realisation that stress is the main cause of my ilness. Psychological and physical stress I put on my body in the past. Meditation and mindfulness have definitely been a huge impact in my journey!

    • Reply Jillian August 16, 2016 at 3:30 am

      Thanks for connecting Tamara. I understand what you mean. I think part of my total collapse was being a workaholic perfectionist. I need to be much more gentle and caring towards myself, and am learning how to do that. Stress is sooooo bad for us. I develope severe neck pain, a migraine, and nausea whenever something stressful occurs of I am with a toxic person. One time blood vessels even burst in my legs from being stressed. My white blood cell count plummets during periods of prolonged strain. Right now I am focusing on my mind and thoughts so that I remain peaceful and unfazed during times of crisis. I am wishing you well on your way to healing and hope I can follow suit with the meditation and mindfulness.

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