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30 TIPS FOR TREATING CFS

Posted by amber | Meds | Posted on October 12th, 2011

The information below is from my favourite book on the subject: From fatigued to fantastic by Dr J Teitelbaum. Hope it helps you.

30 Top Tips for Treating CFS & Fibromyalgia When All Else Fails

Part 1 of a 3-Part Series

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. 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!

Part 1: Recheck the Basics

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:

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

If not, read my article Sleep and Insomnia. If you’ve found that sleep medications aren’t working for you, download the SHINE Protocol document 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. 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 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. 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 How Often are Spastic Colon (and CFS) Really Celiac Disease (Wheat Allergy)?

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.

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. (You can find more information on heparin in my book From Fatigued to Fantastic!) 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)

11. Consider a trial of high-dose T3 thyroid hormone.

If it hasn’t been tried, consider a trial of high-dose T3 thyroid hormone. (For more information on this approach, see the Dr. Lowe website.) Many people with fibromyalgia are resistant to thyroid hormone — it’s as if their body is “deaf” and has trouble “hearing” the hormone — and they need high levels to achieve normal function.

*12. Optimize your adrenal with Adrenal Stress End, Cortef, DHEA-S.

Is your adrenal functioning optimized? Probably not, if you have one or more symptoms of suboptimal adrenal functioning, which include low blood pressure, post-exertional fatigue, or becoming very irritable when hungry. You can optimize adrenal function with the Adrenal Stress End herbal mix, the adrenal hormone Cortef (5 to 15 mg daily by prescription), and DHEA (if DHEA-S is suboptimal). You should also drink more water and consumer more salt (unless you have high blood pressure or heart failure).

*13. Stimulate hormone production with Pregnenolone.

Pregnenolone is the “mother hormone” — the main raw material your body uses to make other hormones, like cortisol, DHEA, estrogen, progesterone and testosterone. We have found that pregnenolone is often low in CFS and fibromyalgia. Have your level checked — and treat if you find it’s suboptimal.

14. Consider growth hormone injections.

IgF is a biochemical marker for growth hormone (GH) — and we see GH deficiency over and over again in fibromyalgia. If your IgF levels are suboptimal, consider GH injections. (These are expensive, so this isn’t an early choice for treatment.) In a recent study, the dose was .006 mg/kg/d of GH, adjusted based on IgF levels. Good news: exercise, sex, and sleep also raise GH. (You can read more about FMS and GH in one of this issue’s research briefs.)

15. Oxytocin can produce quick benefits in some cases.

Oxytocin is an important hypothalamic neurotransmitter, which is shown to be low in FMS. I suspect a deficiency is present in those with pallor and cold extremities. The typical dose (administered via intramuscular injection) is 10 units (add 0.2 cc lidocaine without epinephrine to minimize stinging). If it’s going to help, the benefits will begin in 45 to 60 minutes and are clear cut. If the injection works, you can try a sublingual (under the tongue) or nasal spray, made by a compounding pharmacy, to see if there’s a similar benefit — but these forms are less effective and more expensive than the injections. The injections can be used daily, or daily as needed.

16. In women, look for PCOS (Polycystic Ovary Syndrome).

Ten percent of American women have PCOS — a condition characterized by high blood levels of testosterone and DHEA associated with insulin resistance (blood sugar problems). The symptoms can include acne, increased facial hair, irregular periods and infertility. If those symptoms are present along with an elevated testosterone and DHEA level, and a fasting insulin blood level over 10, you might have PCOS triggering your CFS/FMS. Treatment consists of:

  • The prescription anti-diabetes drug metformin, at 500 mg, 1 to 2 times daily. (Metformin can cause vitamin B12 deficiency, so be sure to take the Energy Revitalization System vitamin powder with it. Beyond that, it is an excellent and very safe medication.)
  • Cortef, at 10 to 20 mg a day, can also improve PCOS.
  • Cut sweets out of your diet — sugar flares PCOS.
  • Some birth control pills can help regularize the menstrual cycle.

*Nutritional Therapies

Make sure your foundations are covered by taking the Energy Revitalization System vitamin powder (1/2-1 scoop a day) plus ribose (Corvalen) 5 gm 2-3x day. I also recommend zinc (sulfate or picolinate) 25 mg a day for 3-6 months for everyone with CFS/FMS. After 3-6 months, the zinc in the vitamin powder is enough to maintain zinc levels. At a few cents a day, it offers remarkable immune benefits at very low cost.

*17. Take these additional supplements for first 3-6 months.

For 3 to 6 months, add:

*18. Check for food allergies.

Food allergies can severely aggravate CFS/FMS. To see if food allergies are playing a role, go on a Multiple Food Elimination Diet. A wonderful technique to treat food allergies is a specially modified form of acupressure, called NAET. (For more information, and a list of the over 10,000 practitioners worldwide, visit the NAET website.) In addition, many food allergies settle down after you provide adrenal support and treat Candida.

19. Take high-potency nutritional IVs.

These are called Standard IVs at the Fibromyalgia and Fatigue Centers (which use a special advanced formula) and Myers Cocktails in holistic practice. I recommend taking a set of 6. You can find the recipe for Myers Cocktails in From Fatigued to Fantastic!, at IV (Intravenous) Nutritional Support Gets More Support, and at Fibromyalgia and Fatigue Centers.

20. Take iron.

Iron is critical for thyroid function, helping to convert T4 to active T3. It also helps produce dopamine, a key neurotransmitter. And it helps settle down Restless Legs Syndrome. So be sure your iron stores are optimized. Have your blood ferritin (a biomarker of stored iron) level checked. If the level is under 60, you should take 29 mg a day of iron, plus 100 mg vitamin C (which aids absorption). Important: the so-called “normal” range for “adequate” ferritin is anything over 12, which is frankly insane.

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 3: Going After Hidden Infections

If you have strep throat or a bladder infection, it’s easy for a doctor to collect the bacteria, put it in a culture dish, and figure out the type of bacteria that’s causing the problem — and treat it. But if you have one or more of the infections that are commonly seen in CFS and fibromyalgia — antibiotic-sensitive, viral, parasite, and Candida infections — there aren’t any accurate tests for detection. That means these infections often need to be treated empirically without lab confirmation, based solely on symptoms and their response to treatment.

In earlier newsletter articles, I have discussed when to treat for hidden antibiotic-sensitive infections and when to consider a trial of antivirals. In addition (and most importantly) aggressively treating Candida is a crucial part of treatment for virtually everyone with CFS and fibromyalgia. Those three articles supply the basis for treating infections directly, and are worth reading if you have persistent CFS/FMS. The question is what to do when you suspect hidden infections that you can’t get rid of. This is the focus of today’s article.

Begin With a Basic

Before I get into the final top 10 tips, let me remind you of a basic. Take zinc 20-25 mg a day for 3-6 months. Zinc deficiency is the rule in CFS/FMS, and will cause marked immune dysfunction — which is easy to fix for under $10 total cost (for 100 tabs).

Treatments for Hidden Infections

Note: As in each of the previous two installments, I’ve put an asterisk (*) next to treatments that are self-care/non-prescription. The other treatments require that you work with your doctor. Also, as I did before, I’ve listed treatments that require a blood test at the end of the article (a convenient summary in case you want to do all those tests at one time).

(Continuing the “30 top tips” numbering at 21, as 1-20 are in Parts 1 & 2 …)

*21. ProBoost.

This powerful over-the-counter and natural immune stimulant is especially helpful for viral infections. In a study on Epstein-Barr virus antibody levels in CFS, ProBoost decreased levels by 70% — and many patients felt a lot better after taking it for three months. Dissolve the contents of one packet under your tongue, 3 times a day. (If you swallow it, you waste it — it needs to be absorbed under your tongue.) I recommend ProBoost not just for folks with CFS, but for everyone’s medicine cabinet. Taken at the first sign of a cold or flu, it can very quickly knock out the infection. For CFS, it takes about three months to have an effect.

22. Nizoral — a prescription antifungal.

Have yeast symptoms persisted (e.g., sinusitis, nasal congestion, canker sores — also called apthous ulcers) despite taking Diflucan? Try Nizoral, 200 mg a day, for six weeks in case you’re resistant to Diflucan. Take adrenal support (e.g., Adrenal Stress End) with it as Nizoral lowers adrenal levels (which can help anxiety and depression in the small percent of CFS patients with elevated cortisols!).

*23. Sinusitis Nose Sprays.

For persistent sinusitis, use the non-prescription Silver Nose Spray (or can add the prescription “Sinusitis Nose Spray” from ITC Pharmacy, 888-349-5433) 1-2 sprays in each nostril, twice a day. When added to Diflucan these sprays are a very effective treatment for eliminating sinusitis.

24. Gamma globulin (IM injection).

Treat with gamma globulin (e.g., Gammastan): 2 cc by intramuscular injection (IM), once a week for 6 doses, or 4 cc every other week for 3 doses. (IM is much less expensive than intravenous delivery.) This drug can be a dramatically effective way to jump-start your immune system (which is why I flagged it using red italic type).

25. Antibiotics for SIBO (Small Intestinal Bacterial Overgrowth).

Consider SIBO if bowel symptoms (diarrhea, gas, bloating) persist despite yeast treatments — especially if the flatulence has a strong odor (learn more about SIBO). You may benefit from a trial of Rifaximin, an effective antibiotic for SIBO (and irritable bowel syndrome), because it stays in the gut and works in the gut. Take 400 mg a day for 10 days.

If severe bowel symptoms persist, consider Alinia, 1 gm 2x a day for 10 to 14 days. (The standard course of this antibiotic is 4 days, but that is inadequate in CFS.)

Both of these antibiotics are expensive. A cheaper option to Rifaximin is Neomycin, 500 mg 3x a day for 10 days. Rifaximin may be preferred because Neomycin carries a small risk of kidney or hearing toxicity, but mainly in an elderly person who is on a high dose of it for years or a person with kidney failure.

An important point: SIBO is aggravated by underactive thyroid and is likely to recur unless thyroid function is optimized.

26. Amantadine (Symmetrel).

This old (and cheap!) prescription antiviral can be very helpful. But amidst the new antivirals that cost $15,000 to $20,000 a year, this pennies-a-day prescription medicine is often forgotten. Ask your doctor about a trial of this medication if you suspect a chronic viral infection. Added benefits? Amantadine raises dopamine (think more energy) and lowers NMDA (think less pain)!

27. Isoprinosine.

Some find this antiviral quite helpful. However, it is not made or available in the U.S. You have to order it either from Canada or Ireland. (Learn more about Isoprinosine.)

Other antivirals:

  • The antiviral Nexavir can be helpful. But I rarely use it as the price has been jacked up dramatically, it is given by injection, and it stops working as soon as the medication is stopped.
  • You can find information about checking for and treating HHV-6 with Valcyte, and the use of other prescription antivirals, by reading Treating Hidden Viral Infections in CFS/FMS Can Sometimes be a Cure. I rarely use Valcyte though, and prefer the other treatments discussed in this article.

*28. Monolaurin.

This natural, low-cost antiviral has been found to be effective in some patients and is well worth a try for chronic viral infections.

29. Neurotoxin protocol.

You can read more about Richie Shoemaker’s neurotoxin protocol at The Environmental Illness Resource. It is also discussed in my book From Fatigued to Fantastic!

30. Antiviral IVs.

This treatment can be very effective when chronic viral infections are suspected. They contain a special antiviral component derived from licorice, along with high-dose vitamin C. It is offered at the Fibromyalgia and Fatigue Centers.

31. (A bonus tip.)

I know I said 30 treatments, but here is a bonus one. For those with pure CFS without the widespread pain, or with such severe illness that they are near housebound — especially if low blood pressure, NMH or POTS are present — the medications given to hyperactive children can be very helpful. These medications, which are amphetamines (Ritalin, Dexedrine or Adderall), are overused in hyperactive children, but under used in CFS. They stabilize autonomic function and often help the post exertional fatigue and even help shed the extra weight put on by CFS. So why is it last on my list? Because it is an amphetamine and potentially addictive. I find 5-12.5 mg is usually optimal, though younger patients (under 30 years old) are more likely to benefit from it (and oddly may need slightly higher doses). I recommend keeping the dose under 20 mg/day (30 mg is the maximum I’ll use) and once an effective dose is found it should not be escalated. I have found addiction to be uncommon at these lower doses — just as it is uncommon in ADHD at low dose.

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)

Kick me when I am down

Posted by amber | My Diary | Posted on October 12th, 2011

You know with CFS you kind of think you have been punished enough for this lifetime or at least you are able to ‘expect the unexpected’ and ‘take it on the chin’ but clearly I am a slow learner.

Today my baby girl, Black died. She was my constant companion over the last 3 and a half years. She spent every afternoon, without fail, curled up next to me on the couch. Once comfortable and having been stroked to induce vibrating purrs , she would almost throw herself on her back, tummy in the air, awaiting a belly rub. And don’t think a couple of minutes would do. Generally i would fall asleep whilst attending to her. When my eyes were too sensitive too light she would happily tunnel under the blankets with me and fall asleep alongside me.

And she gave the dogs hell. God forbid they got too close she would lash out with a talon and a hiss and they learnt to make a wide circle around her. Her favourite spots to nap when I was out, were behind the blinds in our bedroom or under a bush in the garden. She loved biltong and licking the yoghurt from my breakfast bowl.

Here she is with Lopez, a new buddy. The two of them would sprint up and down the passage at home, on and off the bed and eventually someone would come off second best. Usually Lopez, even though she was twice the size of Black. Lopez is missing her buddy too.

Black’s other favourite pasttime was licking the shower after you had been in it. I will miss that even though I would sometimes get irritated because she would sit outside the door of the shower crying till you opened it for her.

And lastly who will wake me at 6 in the morning with a continuous meows. Sometimes as many as twenty in a row.  And when that didn’t work a light tap to my nose, followed by an even more energetic one -using the claws – usually did the trick. And then contented she would knead and purr the duvet and then throw herself on her back for the customary tummy tickle.

Life is not fair?

And how much is one meant to endure?

And can there be a god that lets this happen?

And as for this below – “I f..cking hope so.”