In my last blog post, I began a discussion of my top 10 tips for more affordable and simpler treatments for CFS and fibromyalgia. In that article I went through the 1st 5 tips on my list. In this article, I'm presenting the remaining 5.
Tools & Tips to Simplify Care (Tips 6-10)
6. Use GoodRx to Avoid Ultra-High Prescription Prices
When people don't have insurance to cover the cost of medications, they're often charged 10-40 times what an insurance company would have to pay. A terrific tool to help you buy medication at much cheaper rates is the smartphone app "GoodRx." Alternatively you can just visit the GoodRx website. Simply enter the name and dose of the medication you need and GoodRx will provide you a coupon to print that will often lower the price by 90% or more! (I'm not exaggerating — this is more the rule than the exception.) Patients will be pleasantly shocked. For example, I searched for Ambien and GoodRx gave me a coupon discounting it from $4 a pill all the way down to 8 cents a pill!
Another helpful tip for men: 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'll love. Order Sildenafil 20 mg tablets (available in generic for pulmonary hypertension). Using GoodRx, 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 even helps their CFS!
Another tip is to look into using compounding pharmacies. Compounding pharmacies can often make medications, such as fluconazole and others, at a small fraction of regular pharmacy prices.
7. IV Gamma Globulin (and Help With Insurance and Disability Paperwork)
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 (about ½ gm/kg each 3 weeks) often results in dramatic improvement after four months of use. It's very expensive, however, so patients will have to get insurance coverage, which can be difficult. If you'd like help getting your insurance company to approve this, you can contact Denise Haire from my office (email@example.com). She is also excellent at helping people with CFS/FMS with applying and getting approved for their disability insurance, and can review your medical records to help put together the letters needed for your insurance company or Medicare, so that people who are disabled can get approved for disability coverage. This can be very helpful to you while also making your doctor's life much simpler.
8. Treat Orthostatic Intolerance (NMH, POTS)
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. But this isn't the case in CFS/FMS. A new medication just came out at a cost of $120,000 per year — a complete absurdity, and I refuse to even mention the medication's name. My impression is that rather than buy this medication, you'd be better off to simply dramatically increase your salt intake (I like to use a tasty good quality sea salt like Celtic Sea Salts) and drink more water. In addition, be sure to get medium pressure (20-30 mm) thigh-high compression stockings and wear them when walking around. People with CFS/FMS find these dramatically improve stamina. And for only $60 a pair versus $120,000! You can also download this excellent information sheet on treating orthostatic intolerance as well as take a simple quiz that will tell you in one minute whether orthostatic intolerance is present (validated in the Mayo Clinic Journal, and I find it much better than spending $1,000 for a tilt table test).
9. Reduce Anxiety
- Two new herbals called Anxiocalm® and Maximum Stress Control™ (both in the Terry Naturally line by EuroPharma) are excellent for reducing anxiety.
- Severe anxiety is a clue that mycotoxins may be an issue (see tip 5 from my previous post).
- Check out the Buteyko Breathing Method.
10. Consider 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 (and have them stay on it if it does). This is difficult to sustain long term, so I don't begin treatment with it, as most people get well without having to avoid milk and gluten. It isn't enough to simply avoid gluten and dairy, or you'll become malnourished. Instead, do a consultation with a nutritionist. My favorite for this is Chef Lauren Hoover-West, the wife of Brad West ND. Lauren has appeared and cooked on ABC Live in Chicago and Sacramento. She has also cooked for 4 United States Presidents and is the author of the No Wheat, No Dairy, No Problem cookbook and blog website. She can guide people via phone consultation.
As I mentioned in tips 1-5, I find it personally very rewarding to help people with CFS and fibromyalgia recover, and we offer three-hour consultations to discuss individual cases with people worldwide (in person or over the phone). If you'd like more information about this, or if you'd like to arrange an appointment, please contact Sarah from my office at firstname.lastname@example.org.
Love and blessings,
Jacob Teitelbaum MD