After 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 dozens of practitioners (if not over a hundred) in the medical 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:
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 many.
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, not just giving them another label.
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 many.
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, not just giving them another label.
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.
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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 are by far the two best if you are uncertain as to the basis of your condition.
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 the American College for the Advancement in Medicine for potential doctors. Another good option is the Fibromyalgia and Fatigue Centers which are headed up by Dr. Jacob Teitelbaum who wrote the book "From Fatigued To Fantastic". Further information on Dr. Teitlebaum's approach can be found on his website.
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 viral infections such as EBV, CMV, HHV-6 and others. One lab that may be a good option is Medical Diagnostic Laboratories. At one time, they had a panel of several common viruses available that you may wish to inquire about. Their current requisition form is available here.
Another pathogen that has been in the news a lot over the past year and is worth evaluation is XMRV. XMRV is a retrovirus that may be present in the majority of people with CFS, FMS, Lyme, autism, and other chronic medical conditions. Testing for XMRV is available through VIP Labs. In my opinion, anyone with a long-term chronic illness should be evaluated for XMRV. Unfortunately, treatment for XMRV is less clear. Some people are embarking on the use of anti-retroviral drugs such as AZT and Raltegravir for the treatment of XMRV. I personally would not do this and will pursue herbal options if necessary in the future. The whole story of XMRV is an exciting one to monitor as it may offer hope to millions of people over the next several years.
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 many parasites, but also checks for Candida, bacterial infections, inflammation markers, and more. Another more recent test for parasites which I have also performed and found useful is the GI Effects from Metametrix. Another option which I used some time ago is the Parasitology Center in Arizona lead by Dr. Omar Amin, PhD. 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. There is also another panel that I think may be good. That is the Tick-Borne Diseases Panel from Medical Diagnostic Laboratories. Clongen and Fry Labs are exciting recent options in the field of Tick-Borne Disease testing. Spiro Stat Technologies has some exciting new panels. I also think the CD-57 holds promise and should be performed when Lyme disease is a potential diagnosis or the patient is chronically ill with no known origin. 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. 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.
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. There is also another panel that I think may be good. That is the Tick-Borne Diseases Panel from Medical Diagnostic Laboratories. Clongen and Fry Labs are exciting recent options in the field of Tick-Borne Disease testing. Spiro Stat Technologies has some exciting new panels. I also think the CD-57 holds promise and should be performed when Lyme disease is a potential diagnosis or the patient is chronically ill with no known origin. 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. 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.
I would consider getting tested for mold sensitivity from ALCAT. Spiro Stat Technologies has a new panel for mold and fungal issues that include organisms such as Candida, Stachybotrys, Histoplasma, Cryptococcus, and others. I'd love to hear any feedback that you may have if you've done the new panel from Spiro Stat. This panel, as I understand, is not looking at allergic reaction or sensitivity but looking more at colonization in the body of specific molds/fungal forms.
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. There are various plate tests that can be done at a lower cost, but after having done many of those and not gotten a clear picture, the ERMI revealed all and is my top pick.
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,
