Treating CFS and fibromyalgia (CFS/FM/ME) can be very satisfying, because with proper treatment even these severely ill people usually improve, and sometimes completely recover, given the proper treatment. They are also remarkably complex, however, and it is easy for you and your practitioners to burn out if you don't use the proper tools to simplify care.
We have discussed how to effectively treat these illnesses in previous articles, and more detail can be found in my books From Fatigued to Fantastic (for practitioners) and The Fatigue and Fibromyalgia Solution (an easy read for people with the illness).
To summarize, these illnesses represent an energy crisis where the person essentially blows a fuse (called the hypothalamus). This circuit breaker can be turned back on and function restored by optimizing energy production with the SHINE Protocol (Sleep, Hormones, Infections, Nutrition, Exercise as able). In our published randomized placebo-controlled study, 91% of people with CFS/FMS improved with an average 90% increase in quality of life (p<.0001 vs placebo). So we already know these are real and very treatable conditions.
Here are 10 more tools to simplify patient care, and to add new powerful treatments for those who do not improve or recover with SHINE:
TOOLS TO SIMPLIFY CARE:
1) The free Energy Analysis Program at www.EndFatigue.com can analyze a person's symptoms and (optional) even their key lab tests to determine what is causing their energy drain and tailor a protocol to their case to optimize energy. The person can do it themselves, or with a family member's or friend's help. In just 10 minutes. All of the work needed to determine what is causing YOUR energy drain, and how to fix it, is then done online for free with the click of a button.
2) Treating the Pain: Although the pain most often begins with muscle shortening caused by inadequate energy, the chronic muscle pain then triggers "brain pain" or central sensitization. Think of pain as being like the oil light on your body's dashboard telling you that something needs attention. If you put oil in the car, the oil light goes out. If you give the body what it needs, the pain goes away. What it needs varies by the type of pain. When the body's need is not addressed, the brain amplifies the pain, and the pain can become self-sustaining. This occurs because of increased microglial cell activity in the brain.
The pharmaceutical industry has focused on three modestly helpful medications that are very expensive and have significant toxicity. Three other medications, however, can also decrease microglial cell activity which causes central sensitization and can result in significant improvement. These are:
Treat the central sensitization (brain pain).
Low dose naltrexone. This medication has been shown to help rebalance immunity and decrease central sensitization and microglial cell activity. Give 3-4.5 mg at bedtime, and give it at least two months to work. It may initially disrupt sleep, in which case starting with a lower dose and giving it in the morning instead can help the body to adapt. It is available from compounding pharmacies at about a dollar a day. If it was still patentable, I'm certain the drug companies would be charging $20,000- $120,000 per year and every physician would know about it. Have the patient read the book The LDN Solution by Linda Elsgood. I would use this treatment for most autoimmune and severe chronic pain conditions. Unfortunately, it cannot be used in patients also taking narcotics, in which case the two treatments below may help.
Minocycline 100 mg 2 x day. This antibiotic medication also helps to rebalance microglial activity, even in the absence of infections. Be sure to also treat to prevent Candida overgrowth.
- ACE inhibitors (e.g.- Enlapril or vasotec)10-20 mg a day
3) Other tips for treating pain
For those of you requiring narcotics, be aware that these will routinely cause both B vitamin and testosterone deficiency, amplifying the pain. Be sure you take a high potency B complex (e.g. – the Energy Revitalization System vitamin powder by Enzymatic Therapy) and have your doctor optimize your testosterone to keep it at least midrange normal.
hCG- research by the pain specialist Dr. Forest Tennant in patients requiring very high-dose narcotics showed that giving 25 to 500 units of hCG sublingually daily decreased the narcotic dose needed by 30 to 40% after several months.
- Natural remedies can be more effective than medications for pain, and can be added to pain medications as well. The most effective? Curamin (by EuroPharma) has been a pain relief miracle. I also will add topical comfrey (Traumaplant). Although this works very quickly, give it six weeks to see the full effect. In head on studies with Celebrex for arthritis, Curamin was shown to be more effective. Except for the LDN (which cannot be used with narcotics or Ultram), all of the above can be taken with any pain medications
5) Treat mold neurotoxins
A. this can be an important part of the process in a selected subset of people. This is work developed by Dr. Ritchie Shoemaker, who is brilliant, but is so smart that he can be unintelligible. I once tried to get him to "dumb down" the information by getting him drunk, but this was only slightly effective. Dr. Neil Nathan succeeded where I failed in this, and has just come out with a brilliant and very simple ‘how to' book for treating neurotoxins, called Mold & Mycotoxins: Current Evaluation and Treatment 2016. This is available on Amazon (Kindle), can be read in under an hour, and will give you all the information you need to immediately begin effectively treating these conditions. Dr. Nathan has jokingly nicknamed it Shoemaker/neurotoxins for DummiesI I highly recommend it for both you and your physician if you suspect that mold neurotoxins may be playing a role!
6) IV Gamma Globulin (and help with insurance and disability paperwork)
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in about 10% of my sickest patients who have severe refractory CFS/FMS, often leaving them bedridden, I will check antibody levels of IgG 1-4 (available from Quest or labcorp – order ""Immunoglobulin G, subclasses 1-4, serum" and "Immunoglobulin, quantitative, IgA, IgE, IgG, IgM, serum".). Work by Dr. Mark Sivieri has shown that people with CFS/FMS often have IgG 3 or IgG1subset deficiency, and this has been my experience as well. In these cases, IV gamma globulin (~ ½ gm/kg each 3 weeks) often results in dramatic improvement after four months of use. It is very expensive, however, so they will have to get insurance coverage – which can be difficult. I use the services of Denise Haire (firstname.lastname@example.org ), who can work with people to help them get insurance coverage. She also is excellent at helping people with CFS/FMS in applying for their disability insurance, and can review the medical records to help people put together the letters needed for their insurance company or Medicare, so that people that are disabled can get disability. This can be very helpful for you, while also making your doctor's life much simpler.
7) Avoid getting overcharged by prescription prices
If people don't have insurance to cover the medications, they often get charged 10 to 40 times what the insurance company is paying. A simple tool? Download the free app "GoodRx" or you can go to www.goodRx.com . Put in the name and dose of the medication, and print out a coupon that will often lower the price by 90+ % (I'm not exaggerating – this is more the rule than the exception). Patients will be pleasantly shocked. For example, Ambien is 8 cents a pill instead of $4.
For erectile dysfunction, the medications can cost $70 a pill. Viagra (sildenafil) should be available in generic, but pulled a legal ploy to avoid this. But there was a loophole that you will love. Order Sildenafil 20 mg tablets (available in generic for pulmonary hypertension). Using the GoodRx app, these are available for 50 cents a pill (1% of the cost of Viagra!). Some women also find it helpful for libido, and a small percent find it also helps their CFS!
For other medications such as fluconazole, compounding pharmacies can often make the medication at a small fraction of the regular pharmacy cost
8) Treat the orthostatic intolerance (NMH, POTS)
Basically, when we stand up, gravity makes our blood rush down to our legs. If not for our autonomic nervous system telling our legs to send the blood back up to our brain and muscles, we would pass out. In most people, the autonomic system works well. This is not the case in CFS/FMS. A new medication just came out at a cost of $120,000 per year. An absurdity, and I will not even mention the medication's name. My impression is that it is far more effective to simply have the person increase their salt intake dramatically (I like to use a tasty good quality sea salt like Celtic Sea Salts) and increase water intake. In addition, be sure to get medium pressure (20 – 30 mm) thigh high compression stockings and wear them when you are walking around. People with CFS/FMS find these dramatically improve stamina. And for only $60/pair versus $120,000! Feel free to email me at EndFatigue@aol.com to ask for an excellent information sheet on treating orthostatic intolerance as well as a simple quiz that will tell you it one minute whether orthostatic intolerance is present (validated in the Mayo Clinic Journal – I find it much better than spending $1000 for a tilt table test).
9) For anxiety
Two new herbals called Anxiocalm and Maximum Stress Relief (both in the Terry Naturally line by EuroPharma) are excellent.
Severe anxiety is a clue that mycotoxins may be an issue (see #5 above).
- Check out the Buteyko Breathing Method.
10) Going Gluten Free
When people don't respond to other treatments, I have them do a gluten and dairy free diet for 3 weeks to see if it helps (stay on it if it does). This is difficult to sustain long-term, so I do not begin treatment with it, as most people get well without having to avoid milk and gluten. It is not enough to simply avoid gluten and dairy, or you will become malnourished. Instead, do a consultation with a nutritionist. My favorite? The wife of Brad West ND, Chef Lauren Hoover-West has appeared and cooked on ABC Live in Chicago and Sacramento. She has cooked for 4 United States Presidents and is the author of No Wheat No Dairy No Problem cookbook and the blog site www.NoWheatNoDairyNoProblem.com . She can guide people via phone consultation.
Here is one bonus tip. People don't like being part of the "handful club", taking handfuls of pills each day. They also won't stick with it.
I make this easy for everyone, and people are very happy because they see a quick response, by simply have them take a morning energy drink called the Energy Revitalization System (by Enzymatic Therapy) which replaces over 35 supplement pills with one low-cost easy drink (replacing their multivitamin and sometimes dozens of other pills). I have them add one 5 gm scoop of ribose (SHINE) which in two studies we published increased energy an average of 61% after three weeks. I add one Vectomega tablet, which replaces eight fish oil capsules. This is what I take each morning, and you will find that it turbocharges you and most people with healthy energy as well.
It's a lot of fun helping people with this illness get well, and we do 3 hour in person or phone consultations with people worldwide. For info om making an appointment, contact Sarah at Appointments@endfatigue.com .
Love and blessings,
Jacob Teitelbaum MD*
*Jacob Teitelbaum, MD, is Director of the Practitioners Alliance Network (PAN) and author of the popular free Smart Phone app "Cures A-Z," and of the best-selling book From Fatigued to Fantastic!, He is the lead author of 4 studies on effective treatment for fibromyalgia and chronic fatigue syndrome, and offers an online CFS/FMS training course for practitioners at www.vitality101.com/pan and the free Energy Analysis Program at www.endfatigue.com