Wednesday, September 7, 2011

(Part 1) Tips for treating CFS/FMS when all else fails

[The following information is provided by Jacob Teitelbaum, MD, Medical
Director of the Fibromyalgia & Fatigue Centers, Inc.  This is part 1 of a
3-part article written by Dr. Teitelbaum that he is releasing through his
newsletter and blogs. Parts 2 and 3 will be released in the next 2 weeks.]

30 TOP TIPS FOR TREATING CFS & FIBROMYALGIA WHEN ALL ELSE FAILS - PART 1 OF
3

When giving lectures, I'm sometimes approached by people who say they've
tried everything for their CFS or fibromyalgia - but nothing helps. In most
cases, I ask them if they've even tried the basic treatments in the SHINE
protocol (such as the sleep medication Ambien, the adrenal hormone Cortef,
the anti-fungals Diflucan and Anti-Yeast, and the thyroid supplements Armour
or BMR Complex). Their answer is usually no.

Occasionally though, the person is still ill even having done SHINE. Though
our published research shows that over 85% of CFS and fibromyalgia patients
feel significantly better after just 3 months on SHINE, that's not good
enough - Our goal is 100% relief!

In this series I discuss 30 treatments that can be very helpful in stubborn
CFS/FM cases, and I explain an overall approach to using them. I group the
30 treatments by categories, in the order in which they should be
considered. Each part in the series will cover 10 of these special
treatments.

You should begin with the basics by getting started on the core SHINE
protocol. If you haven't already done so, do the free Symptom and Lab
Analysis Program
(http://www.endfatigue.com/treatment_options/Online_program.html). This will
create an individual SHINE treatment protocol customized to you, based on
your symptoms, and if available, the pertinent lab tests.

The basic treatments, along with SHINE, will help most of you get your life
back. But if you're having trouble getting better, or you're better but not
better enough - read on to learn what to do next!

RECHECK THE BASICS (PART 1)

Part 1 includes the first 10 of 30 treatments to try "when all else fails" -
and a lot of these focus on sleep.

For easier readability, I show an asterisk (*) next to the treatments that
are self-care/non-prescription. The other treatments require that you work
with your doctor. (Note that some of the asterisk treatments are actually a
mix of self-care and medical care.) At the end of this section, you'll find
a list of which treatments require a blood test (a convenient summary in
case you want to do all these tests at one time).

SLEEP

Start by trying the following four treatments. If they fail to work, move on
to the numbered steps below:

* Herbal mixes

* Medications Ambien, trazodone and/or Neurontin

* Low dose melatonin (.5-1 mg)

* And a drop of lavender oil on your upper lip at bedtime

*1. Be sure you are sleeping eight hours a night.

If not, read my article Sleep and Insomnia
(http://www.endfatigue.com/health_articles_r-s/Sleep-sleep_and_insomnia.html).
If you've found that sleep medications aren't working for you, download the
SHINE Protocol document
(http://www.endfatigue.com/documents/shine_protocol_download.pdf) and review
treatment numbers 22 through 46a for a partial list of natural and
prescription sleep aids that can help with fibromyalgia. Most people
discover that there are many helpful sleep treatments that they've not tried
yet.

*2. Do sleep medications initially work for a few days or weeks, and then
stop working?

If so, rotate them. For example, if each medication works for only two
weeks, then take it (or a mix of a few treatments) for 10 days and then go
on to the next medication. When you are on the last medication that works,
go back to the first one(s). You'll usually find that it is effective again!
Another advantage of using herbal sleep aids is that it's uncommon to
develop a tolerance to them.

*3. Are you exhausted all day but wide awake at bedtime?

It's likely that your adrenal glands are under-functioning during the day -
leaving you tired - but that your levels of the adrenal hormone cortisol are
too high at bedtime - causing you to be wide awake. This is called a
"blunted circadian rhythm." If this sounds like you, try the herbal mix
Sleep Tonight (from Enzymatic Therapy). This product brings down an elevated
bedtime cortisol level, and often helps you sleep within the first few
nights of use (and sometimes the very first night). You can take it along
with other sleep herbals and medications. If after a few weeks of this herb
working you start waking in the middle of the night, lower the dose or take
a 1-2 ounce high-protein bedtime snack (see number 4 below) - Sleep Tonight
will have been lowering your cortisol too much.

*4. Do you wake up too early in the morning (between 2 and 4 am)?

This is very common in CFS and fibromyalgia, and has many possible causes.
One that is common and simple to treat is low blood sugar levels during the
middle of the night. (It's not uncommon to see cortisol levels that are too
high at bedtime become too low in the middle of the night, with a
corresponding drop in blood sugar. See "*3" above.) The simple solution is
to eat a 1-2-ounce high-protein snack at bedtime (cheese, an egg, some
nuts). This will help maintain stable blood sugar during sleep. If nighttime
low blood sugar is your problem, the snack will help the very first night.
Also, acid reflux may wake you at night. Take an acid blocker at bedtime 1-2
nights and see if this helps. If it does, don't stay on the acid blocker
(which is addictive). Instead, send me a message on my Facebook page
(http://www.facebook.com/DrTeitelbaum) and I'll give you the solution (and
stay tuned for an article on this in an upcoming newsletter).

*5. Undergo a sleep study to rule out sleep apnea, restless legs syndrome or
UARS (Upper Airway Resistance Syndrome) - or videotape yourself!

Here's a quick, do-it-yourself screening. Videotape yourself sleeping at
night, putting the camera at the foot of the bed so you can see both your
legs and your face. If your legs are jumping a lot during sleep, ask your
doctor to treat you for restless legs syndrome (RLS). The best treatment for
RLS is to take an iron supplement until your ferritin blood level is more
than 60. The medication Neurontin can also help. If the video shows that you
snore and stop breathing during the night, ask your physician to do a "split
sleep study" to look for sleep apnea. In a split study, your physician looks
for apnea the first part of the night. If it's present, they try CPAP
treatment (Continuous Positive Airway Pressure, using a breathing mask)
during the second part of the night. If you don't ask for a split study, the
sleep lab will usually conduct the tests over two nights, which will cost
you double!

NOVEL THERAPIES

*6. The Methylation Protocol.

This protocol, developed by Drs. Amy Yasko and Rich Van Konynenburg, and
researched by Dr. Neil Nathan, addresses methylation defects. (Methylation
is a biochemical reaction necessary for the building and repair of every
cell.) The protocol can be very helpful in a subset of CFS patients who
don't improve with standard treatment. For more information on the Protocol,
see Dr. Nathan's article at the ProHealth website
(http://www.prohealth.com/fibromyalgia/library/showarticle.cfm?libid=16138).
I have great respect for Dr. Van Konynenburg and Dr. Nathan - they are
definitely on the side of angels!

7. Check for celiac disease, with two blood tests: anti-transglutaminase IgA
and IgG antibody.

If your test is positive, you'll probably improve dramatically by avoiding
gluten, a protein found in wheat. (Important: you must not be on a
wheat-free diet before the test.) To learn more about celiac disease, see
/health_articles_c/Cfs_fm-spastic_colon_ibs_like_celiac_disease.html

8. Check for serum ammonia level.

If it's elevated, ask your doctor to treat for bacterial bowel infections.
Elevated ammonia from bowel infections may also aggravate brain fog. (We
talk more about these bowel infections in Part 3 of this series). Also,
consider a trial of lactulose, a prescription laxative that binds ammonia.

9. Try low-dose naltrexone.

This safe, simple and low-cost medication (an old standard in treating
alcohol and drug addiction) can boost immune function and decrease pain in
fibromyalgia. More is not better, as it loses effectiveness if you take more
than 4.5 mg a day. Generally, I give 3.5 to 4.5 mg at bedtime. I order it by
prescription from a compounding pharmacy (ITC Pharmacy, at 888-349-5453).
Your physician can call it in, and the pharmacy can guide your physician in
how to prescribe the medicine. An important point is that you need to give
it at least two months to work. For more information (and you should read
this before starting), visit the website Low Dose Naltrexone
(http://www.lowdosenaltrexone.org).

10. Heparin.

About 50% of people who don't respond to any other treatment improve
dramatically with 7,000 to 8,000 units of heparin, a blood thinner. I give a
subcutaneous injection, twice a day. The benefits are usually seen within 3
to 6 weeks. Unfortunately, this treatment has some risks, such as bleeding,
and even a potentially fatal drop in platelet counts. However, I've never
seen or heard of either of these toxicities occurring when heparin is used
for CFS. I often save this for when all others fail, because of the risk.

SUMMARY OF BLOOD TESTS

There are a number of blood tests used in the treatments discussed in this
three-part series. They are summarized below for your convenience:

* Ferritin (treatment no. 3)

* Anti-transglutaminase IgA and IgG antibody (treatment no. 7)

* Serum ammonia level (treatment no. 8)

* Fasting morning cortisol; DHEA-S (treatment no. 12)

* Pregnenolone (treatment no. 13)

* IGF-1 (treatment no. 14)

* Free and total testosterone (treatment no. 16)

Part 2 will be posted on September 14.

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