Join Date: Oct 2011
| | Big day: I was officially diagnosed AND given a treatment plan for CFS
I was diagnosed with CFIDS today, almost 6 months to the day after first becoming sick. My symptoms are too many to list, but the main ones are: extreme fatigue, shortness of breath, chronic sore throat, and intermittent insomnia.
Approximately 1 month ago, after having visited 9 doctors for my wide-ranging symptoms, I finally self-diagnosed CFIDS. We had ruled out everything else under the sun. That self-diagnosis led me to find a doctor’s practice group that specializes in CFIDS. I found them using this CFS doctor database: [Edit: this board automatically censored my link to another website. But if you want the doctor database, contact me by private message (PM). You can send a PM to someone by clicking their username in the upper left of their post].
Today was my first appointment. Sure enough, the doctor (I'll call him Dr. W) diagnosed me with CFIDS without reservation. The appointment lasted nearly 2 hours, and I learned much in that time. I want to share some of that information here in case it helps others get a diagnosis or treatment.
Please read the following with your own appropriate level of skepticism. This is only one doctor’s opinion.
Note: If you’ve already read Dr. Teitelbaum’s book FFTF, much of this is review. BUT, I found it interesting to note where my doctor disagreed or altered the recommendations of Dr. Teitelbaum.
What exactly is CFIDS and what causes it? You can drive yourself crazy wading through all of the conflicting information about CFIDS in the internet and in books. It seems there are 4 or 5 common theories: (1) It’s a chronic viral infection, usually involving EBV, (2) an immune system defect, (3) a defective hypothalamus, (4) a hormonal imbalance (HPA axis), or (5) mitochondrial dysfunction. I wanted to know if there is a unified theory that ties all of this together. The doctor said, yes: It is believed that CFIDS is usually triggered by either a virus or a hormonal imbalance, which causes the hypothalamus to become defective. The hypothalamus controls your immune system, hormone levels, and mitochondrial function. After your hypothalamus stops working properly, your immune system is compromised, and you become more prone to other infections (both viral and bacterial, especially candida). So, infections can be both a cause and a symptom. Same with hormonal imbalances. The hypothalamus is the lynchpin in the middle of all this.
Prognosis: The good news is that “most” people (according to Dr. W), with proper treatment, are able to manage their symptoms and live a more-or-less normal life. The goal with treatment is to force the CFIDS into remission. Sadly, there is no cure at this time. But, indefinite remission is possible. Everyone responds differently to treatment.
Promising research is being done with stem cells, so it’s possible we may see a cure in the future.
Diagnosis: For me, the doctor diagnosed CFIDS in several ways. First, he looked at the ½” stack of blood work printouts that I have collected over the last 6 months. He noted that thyroid levels, while technically “in range,” were at the far low end of the range. I had brought this to the attention of previous physicians, but they dismissed it as irrelevant. (This problem of erroneous “normal ranges” is echoed in Dr. Teitelbaum’s book.)
The doctor then confirmed the low thyroid levels through a “Thyroflex test.” This is a reflex test that measures the level of thyroid hormone in your tissues, which is better than a blood test. This test involves placing sensors on your hand while tapping your elbow. The sensors are then read by a computer. This test confirmed low thyroid levels. I also have very cold hands and feet, which is another indicator of hypothyroidism.
Second, CFIDS was diagnosed by simply looking into my mouth. Candida overgrowth was apparent by a white film on my tongue. Candida apparently often follows after someone develops CFIDS, due to the weakened immune system.
Third, my blood tests showed high levels of EBV antibodies.
And fourth, I meet the general CDC guidelines for CFS diagnosis, and my past blood tests had already ruled out everything else that could cause my symptoms.
XMRV: I asked if the XMRV theory of CFIDS was considered dead. Based on what I have read recently, I thought the research community had debunked that theory. He said no, it remains an open question, but there isn’t any point in testing for it. It is an expensive test and there is nothing they can do about it if you test positive.
Lyme: He said he treats many Lyme patients and my symptoms are not consistent with Lyme. I previously had the Western Blot test for Lyme, which was negative. (While the Western Blot is better than the old ELISA test, it is still severely flawed. According to Dr. W, there is a brand new test for Lyme that is expensive, but worth it if you have the symptoms).
Diet: As of two weeks ago, I had already changed by diet to a low-carb, low-sugar diet. I did this after reading the book “Recovery from CFS: 50 personal stories.” The book is exactly what the title suggests: 50 short stories from people who claim to have recovered from CFS. I read the book specifically to see what remedies were mentioned most frequently. The most common recommendations were variations on low-carb, low-sugar diets. No less than 5 of the authors recommended a book called: “Life Without Bread.” So I read that book too. I found the evidence in “Life Without Bread” to be very convincing. Dr. W emphatically agreed with this. While a low-carb diet isn’t a cure-all, it seems to be a key piece of the puzzle.
Hormomes: There is no doubt that Dr. W will be giving me hormone treatments. But the types and amounts will depend the results of a new set of blood tests.
Supplements: I know many here are jaded by the endless recommendations of supplements. Dr. W emphasized that I need to not give up too early, and stick with this full regimen for at least 4 to 6 months. The full regimen is:
1. A multivitamin powder,
3. Coenzyme Q
4. Vitamin D3
6. Immune system support. They have their own proprietary brand called ImmuneStim
7. Pro-biotic, to balance intestinal bacteria and get rid of candida.
8. And melatonin for better sleep.
Needless to say, I will be a pill popping machine for at least the next 4-6 months.
Exercise: Dr. W said I should not try to exercise until “we get things under control.” I don't think I could anyway.
Final Thoughts: I don’t know if this will work, but I do believe that the key to sending CFIDS into remission is “getting all of the puzzle pieces into place at the same time,” and then sticking with it long enough to recover. This is another common theme from the 50 Stories book. Many of the people who recovered did so by treating all of their dysfunctions at the same time: mitochondria, hormone, candida, immune function, etc. CFIDS is a “multi-system dysfunction” and needs to be treated as such. (See, e.g. Maggie’s Story from the 50 Stories book).
I realize that I may be out of line offering advice as someone who has not yet improved, but I will say that I have been obsessive about researching this illness and I think I can offer a few words of advice to anyone who may think they have CFS/CFIDS too. First, I would read a book called “From Fatigued to Fantastic,” by Dr. Teitelbaum, to get a basic understanding of what you’re dealing with. The title is corny, but it seems to be the best primer on CFS. At the very least, it will familiarize you with the terminology and the main theories associated with CFIDS. Then find a doctor who specializes in CFS. You won’t get anywhere unless you work with a CFS specialist. I can pretty much guarantee that your family doctor doesn’t know the first thing about CFIDS. It was very satisfying for me, today, to finally speak with a doctor who “talks the CFS talk”. Then I would change my diet as mentioned above.
A word about payment (applicable to Americans only): An HMO would not have covered any of this. Luckily my wife and I recently switched to a PPO, which will cover some of it. According to my doctor, PPOs will typically cover anywhere from 30% to 70%, depending on which PPO you have. If you have an option of switching to PPO insurance, I would do it.
Last edited by Brodie179; 12-06-2011 at 08:00 PM.