Over time, my focus has shifted more towards the Update January 2020: After over two decades of working to recovery my health, I have come to the conclusion that there are more similarities than differences when we look at many conditions such as: CFS/ME, Fibromyalgia, Lyme disease, MS, autism, and even Alzheimer's. Thus, a broad exploration is likely the best path forward. One of the articles that I wrote that I feel applies equally well to CFS/ME/Fibromyalgia can be found here.
There may be some unique aspects to CFS/ME in terms of specific genetic patterns, mitochondrial issues, or somewhat unique pathogens or toxins that will be further identified in the future, but more and more, the drivers of chronic, complex illness appear to be more the same than different.
Original Post (with updates):
As of 2005, a
fter having struggled for eight years with numerous baffling symptoms and having been diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, and numerous other "syndromes", I have studied these disorders for hundreds of hours, read dozens of books, and talked with hundreds of practitioners in the health and wellness community. This discussion is not an attempt to provide details on the CFS/CFIDS/FMS disorders themselves, but rather to share my thoughts and to document what I would do if I knew then what I know now.
From CFIDS Association of America many years ago, this is what I found:
CFIDS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.
fter having struggled for eight years with numerous baffling symptoms and having been diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, and numerous other "syndromes", I have studied these disorders for hundreds of hours, read dozens of books, and talked with hundreds of practitioners in the health and wellness community. This discussion is not an attempt to provide details on the CFS/CFIDS/FMS disorders themselves, but rather to share my thoughts and to document what I would do if I knew then what I know now.From CFIDS Association of America many years ago, this is what I found:
CFIDS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.
The symptoms of CFIDS are highly variable and fluctuate in severity, complicating treatment and the ill person’s ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend.
Additional symptoms are frequently reported by people with CFIDS (PWCs) such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures.
Personally, I had almost every single one of these symptoms over the course of the past many years. The likely cause was not identified until July of 2005. Sadly, had it been, the years of suffering may have been eliminated. Happily, I hope that my struggle will benefit the lives of others in expediting their own healing process.
I believe that Chronic Fatigue Syndrome, Fibromyalgia, and other long-term, chronic illnesses where the origin is unknown are likely similar in their etiologies. I believe that CFS, FMS, and other "syndromes" are, in many cases, a label given by a doctor such that his/her own knowledge does not feel challenged and the doctor believes that they have successfully diagnosed the condition. To me, success means moving the person towards healing in some manner, not just giving them another label and telling them to go home and sit on the couch.
Here are some of my ideas for anyone suffering from Chronic Fatigue Syndrome, Fibromyalgia, or other long-term chronic illness. These are solely my personal opinion. You should always conduct your own research and work with your doctor to determine your individualized course of action.
Personally, I had almost every single one of these symptoms over the course of the past many years. The likely cause was not identified until July of 2005. Sadly, had it been, the years of suffering may have been eliminated. Happily, I hope that my struggle will benefit the lives of others in expediting their own healing process.
I believe that Chronic Fatigue Syndrome, Fibromyalgia, and other long-term, chronic illnesses where the origin is unknown are likely similar in their etiologies. I believe that CFS, FMS, and other "syndromes" are, in many cases, a label given by a doctor such that his/her own knowledge does not feel challenged and the doctor believes that they have successfully diagnosed the condition. To me, success means moving the person towards healing in some manner, not just giving them another label and telling them to go home and sit on the couch.
Here are some of my ideas for anyone suffering from Chronic Fatigue Syndrome, Fibromyalgia, or other long-term chronic illness. These are solely my personal opinion. You should always conduct your own research and work with your doctor to determine your individualized course of action.
1) Read "From Fatigued To Fantastic" and "Chronic Fatigue Syndrome, Fibromyalgia, and Lyme Disease". These are both excellent books that will provide you with great insight into chronic illness, the many factors that may be causing your condition, and potential treatment options. A+ books. I have read dozens and these were by far the two best if you are uncertain as to the basis of your condition. Now, I will say that my journey has now spanned over two decades, and these are not new books. That said, at the time, they helped me to understand a lot that I had previously not.
A more recent book I have found very helpful (though was later in my understanding of these conditions) is Healing Is Possible: New Hope for Chronic Fatigue, Fibromyalgia, Persistent Pain, and Other Chronic Illnesses.
2) Do your own research. Don't count on a doctor to solve your problems. They won't. Though you may have many friends and family supporting you (often not the case sadly), you are the sole creator of your own healing. If a doctor isn't working for you, fire them and get a new one. My experience has been that doctors that don't take insurance are the best. I have rarely found a good doctor in the field of chronic illness that is willing to accept insurance. Find a doctor willing to order tests that you deem necessary from your own research (if they are not already doing appropriate tests that you feel confident with). Create your own health team. Be your own healthcare advocate. Use every resource at your disposal. I truly believe that without the Internet and computer resources, I may not be on the road to healing that I am now on. Look at groups like the International Society for Environmentally Acquired Illness, the Institute for Functional Medicine, or the American College for the Advancement in Medicine for potential doctors. Additional information is available on Dr. Teitlebaum's approach to CFS/Fibromyalgia on his website including a list of certified practitioners.
3) Bacterial/Viral Panels: Run a panel or individual tests to check for common bacterial and viral factors which may be implicated in Chronic Fatigue Syndrome. These tests should look for common viral infections such as EBV, CMV, HHV-6, VZV (shingles) and others. Labs that may be a good option include Medical Diagnostic Laboratories and Fry Laboratories.
2) Do your own research. Don't count on a doctor to solve your problems. They won't. Though you may have many friends and family supporting you (often not the case sadly), you are the sole creator of your own healing. If a doctor isn't working for you, fire them and get a new one. My experience has been that doctors that don't take insurance are the best. I have rarely found a good doctor in the field of chronic illness that is willing to accept insurance. Find a doctor willing to order tests that you deem necessary from your own research (if they are not already doing appropriate tests that you feel confident with). Create your own health team. Be your own healthcare advocate. Use every resource at your disposal. I truly believe that without the Internet and computer resources, I may not be on the road to healing that I am now on. Look at groups like the International Society for Environmentally Acquired Illness, the Institute for Functional Medicine, or the American College for the Advancement in Medicine for potential doctors. Additional information is available on Dr. Teitlebaum's approach to CFS/Fibromyalgia on his website including a list of certified practitioners.
3) Bacterial/Viral Panels: Run a panel or individual tests to check for common bacterial and viral factors which may be implicated in Chronic Fatigue Syndrome. These tests should look for common viral infections such as EBV, CMV, HHV-6, VZV (shingles) and others. Labs that may be a good option include Medical Diagnostic Laboratories and Fry Laboratories.
4) Digestive/Parasite Panels: Ensure that you have run adequate tests for digestive parasites. After my first illness in 1997, it took nine months and 27 doctors to finally run tests to find that I was infected with five different parasitic organisms. See more details on that in my discussion on parasites. Some test options include Comprehensive Digestive Stool Analysis from Genova Diagnostics, Comprehensive Stool Analysis from Doctor's Data, or Expanded Gastrointestinal Health Panel from Diagnos-Techs. These tests will not only potentially reveal parasites, but also check for Candida, bacterial infections, inflammation markers, and more.
For parasite testing specifically, another option which I used some time ago is the Parasitology Center in Arizona led by Dr. Omar Amin, PhD. I am also a huge fan of Parawellness Research led by Dr. Raphael d'Angelo, MD. We had a great talk on one of my earlier podcast episodes.
In general, however, it has been my experience that parasite testing in the US is quite poor, and energetic testing options such as EAV, Asyra, ZYTO, ART, and others may be useful when looking for parasites.
5) Lyme Panels: It is my personal opinion and experience that many long-term illnesses are related to spirochetal infections such as Lyme Borreliosis. After eight years, I was finally diagnosed with Lyme Disease. More information on my diagnosis and treatment are available here on the site. Without a doubt, one of the best (more likely the best) labs for tick-borne disease is IGeneX. A large portion of those infected with Lyme Disease never recall having been bitten by a tick. Don't take the risk of overlooking this as a very real possible cause of your illness. For more information, visit my discussion on Lyme Testing.
6) Mold Testing: Once I figured out that I had Lyme disease, I later discovered that mold was a complicating factor. In fact, it may ultimately have been a bigger issue than the Lyme ever was. Mold is a complex area and there are different schools of thought on how it affects us. Some practitioners approach mold as an allergy or sensitivity and attempt to desensitize patients to molds that they may respond negatively to. Other practitioners such as Dr. Ritchie Shoemaker look at the impact of certain genetic types and circulating biotoxins and the negative implications that these have on one's health. I suggest that looking at the mold issue from both perspectives might be a useful approach though I personally found the work of Dr. Shoemaker to be a game-changer for me personally.
6) Mold Testing: Once I figured out that I had Lyme disease, I later discovered that mold was a complicating factor. In fact, it may ultimately have been a bigger issue than the Lyme ever was. Mold is a complex area and there are different schools of thought on how it affects us. Some practitioners approach mold as an allergy or sensitivity and attempt to desensitize patients to molds that they may respond negatively to. Other practitioners such as Dr. Ritchie Shoemaker look at the impact of certain genetic types and circulating biotoxins and the negative implications that these have on one's health. I suggest that looking at the mold issue from both perspectives might be a useful approach though I personally found the work of Dr. Shoemaker to be a game-changer for me personally.
One might consider getting tested for mold sensitivity from Alletess; though the allergy aspect of mold seems to be secondary to the biotoxin illness aspect of mold for most with a complex, chronic illness.
In terms of testing your home for the possibility of mold, there are several options. In my experience, the best was the ERMI from Mycometrics. Envirobiomics is a newer offering that has also gotten very good feedback. There are various plate tests that can be done at a lower cost such as those from Immunolytics.
7) Heavy Metals: Heavy metals are a component of nearly every chronic illness. Heavy metal testing can be performed through Doctor's Data using either a hair or urine analysis. Another option is the Metametrix Urine Porphyrins panel or the Doctor's Data Urinary Porphyrins panel.
LIA (Lyme in Autism) Foundation has created an excellent list of tests that are recommended for autism. It is my opinion that these apply to anyone with chronic illness. LIA Foundation recommendations can be found here.
Beyond these, there are numerous things that one can do to attempt to improve their situation. Some thoughts:
LIA (Lyme in Autism) Foundation has created an excellent list of tests that are recommended for autism. It is my opinion that these apply to anyone with chronic illness. LIA Foundation recommendations can be found here.
Beyond these, there are numerous things that one can do to attempt to improve their situation. Some thoughts:
- Review my thoughts on detoxification
- Review my thoughts on heavy metals
- Review my thoughts on probiotics
- Review my thoughts on parasites
- Review my thoughts on mold
- Review my personal treatment protocol for Lyme disease
- Review my Health Tips
Lastly, I am always interested in hearing your stories or learning about things that may have been beneficial to you as you moved through your quest to Better Health. Feel free to contact me.
In Better Health,
