Fibro Fix Summit
Dr. Teitelbaum specializes in Fibromyalgia because he himself had it. These are my notes from the interview with him, for more information visit his two web sites linked below.
Fibromyalgia: Clinical Experience Over the Decades
Dr. Jacob Teitelbaum MD
web page prohealth.com This link takes you to his treatment protocol
This is not a single process, making the diagnosis of fibromyalgia is not the end point it’s just the beginning of getting well. What’s key for people to understand is fibromyalgia represents an energy crisis in the body. For any of hundreds of reasons your body is spending more energy than it’s able to make, when that happens it’s essentially blowing a fuse. The name of that circuit in the brain is called the hypothalamus, it’s a small area that uses more energy for it’s size than any other part of the body. When you have an energy crisis it goes offline first, no damage to it it’s basically like a circuit breaker that goes off to protect your body in the face of overwhelming stress. That circuit controls sleep which is why the hallmark of this illness is that you can’t get a good nights sleep even though you’re exhausted. It controls your entire hormone system, thyroid, adrenal, ovaries, testes, pretty much all of it. It controls blood pressure, which is autonomic function, pulse, sweating, gut function, and temperature regulations, so 98.6 is a fever. All of these are on one circuit.
The next area that uses the most energy for it’s size would be your muscles, they are like the spring. When they don’t have enough energy they get locked in the shortened position. That’s counterintuitive, you would think it takes more energy for the muscles to contract. Think about it after you have had a hard days work you have tight muscles. When the muscles get locked in the shortened position for a couple days or years they hurt, like hell. When you have chronic pain that doesn’t get addressed, you get this central sensitisation as the brain tries to get your attention that something needs to be fixed. Then your immune system uses a lot of energy and when you have an energy crisis these areas go offline. The key is to figure out what’s causing the energy drain and to optimize energy production in an organized approach.
This is a very treatable illness if you know what to do, the key is restoring energy. If you use SHINE which is: sleep, hormonal support, infections, immunity, inflammation, nutritional support, and exercise as able. You will find that that restores energy, you can add detoxification to that but the shine protocol will generally help people to detoxify anyway. I like to use a mix of natural and prescription therapies, I find using the whole toolkit works best. Unfortunately most physicians are not trained in this disease, even today. If your doctor does not know how to help you find one that can. There is a web site with over 2,000 holistic physicians at ABIHM.org they are much more likely to know how to help.
We talked about S for sleep, and there is no one treatment that is going to be enough to get you sleeping through the night. The natural remedies by themselves are not going to be enough, the sleep disorder is so severe that you need a mix of often 5-8 things. Here is the trick, if you do a high dose enough of one thing to put you out you’re going to be hung over until 2-3pm the next day. What works much better is use a very low dose of several different things, this way they are all cleared out of the body by morning. You take it your blood level goes up in the middle of the night, it’s not high enough by itself to keep it up. But your doing 2-3 different things, it’s additive, and then you’re out. The medications that are best to put you to sleep would be Ambien, I like to keep it ten milligrams or less because it can be addictive when you start going over 12.5 mg. Trazodone 25-50 mg, Neurontin 100-300 mg, Zanaflex 2-4 mg. Tramadol if you’re having a lot of pain, but if they leave you feeling lousy lower the dose or stop it. From a natural point of view, a half milligram of melatonin, there is a herbal mix called the Revitalizing Sleep Formula that’s very good, 5HTP 200 mg. Be careful if you’re taking other serotonin medications but for most people 200 mg is quite safe even if you’re on other medications, it takes six weeks to work. The smell of lavender, a little bit of oil just under your nose, or even in capsules. There is a mix of over thirty treatments that can be helpful. Most other sleeping pills like valium actually make the problem worse.
A lot of people with fibromyalgia have restless leg syndrome and that family of medications can aggravate it. If you take a look at those their tired, exhausted all day, and then ten pm hits and they’re wide awake like it’s daytime. They tend to have problems with too high of a cortisol at night. The adrenal stress hormone is too low during the day too high at night time. In those cases I’ll give phosphatidylserine and ashwagandha, i’ll use something called Sleep Tonight. It’s a nice mix, it will bring the cortisol right down so they could go to sleep. A lot of people find that between 2-4 in the morning it’s like this universal alarm clock goes off and wakes them up. It’s associated with many things but also low blood sugar during the night. If people eat a protein snack, not carbs that will make it worse, a hard boiled egg, some cheese, some meat, right before bedtime. Just an ounce, that will help them keep their blood sugar stable. They will know the first night that they do that, it’s not going to knock out the problem, but they will sleep more deeply. These things can be helpful but you need to tailor it.
Take down this web site endfatigue.com you will find a free energy analyses program, I made it for people with fibromyalgia. You take a quiz, answer a bunch of questions, if you have the pertinent lab tests there is a place to enter that but you don’t need them. It will analyze all of that, determine what the main problems are in what is triggering the energy crisis in your body, and then tailor a program to your individual case to optimize energy production. When we made this we charged four hundred dollars for people to do this but if you couldn’t afford it you could do it for free. Eighty percent of people wrote back they couldn’t work they were crippled with the fibromyalgia so we just made it free for everybody. Our goal is to make effective treatment for everyone.
H, hormones are a body’s control system and they are regulated by that circuit breaker, the hypothalamus that goes offline. Blood tests miss the large majority of people who meet hormonal problems. Why? When you look at the lab tests what your doctor doesn’t realize, in most cases, is where that normal range comes from. Basically you take a hundred people and the ninety five in the middle are defined as normal, the two and a half on the high and low end are defined as abnormal. It doesn’t say anything, it’s the classic bell curve statistics with standard deviations on either side, not based on function. If you say to the doctor I’m tired, achy, weight gain, cold intolerant, you sound like a poster child for low thyroid. And he will say your test is normal it’s right there on the lowest end of it, but it’s normal because they are just doing TSH.
If you have two of those symptoms you deserve a trial of thyroid hormone, most people do best with one that includes both T3 and T4, the active hormone and storage. Most doctors never prescribe anything but the inactive T4. Then you adjust the dose to what feels best while keeping the Free T4 within the normal range for safety. An important point, when you’re taking T3 hormone the T3 blood test is meaningless, all it will tell you is what time of day you drew the blood relative to when you took the dose. If you take your armour thyroid in the morning and take the blood test an hour later you will be too high, if you take it before you take the thyroid it will be too low, if you take it five hours later it will look just right. It’s a good test to do before you start taking thyroid hormone.
A, adrenal, for the adrenal test you don’t have to be the lowest out of one hundred, you have to be the lowest out of one hundred thousand people. It has to be so low that it literally could kill you and they put you in the hospital. Most people run about eighteen in the morning, it has to be under six to be abnormal, 6.1 is considered no problem at all even if you’re bedridden. 5.9 they do this workup looking for Addison’s Disease, and put a med alert bracelet on you. I have had people where the lab accidentally ran the test twice on the same tube of blood and the test would come back routinely as 4-8 points apart on the same tube of blood. So how do you tell if you need adrenal support, I ask the person, or the person who comes in with them. When they come to see me, most people do phone consults, “Is are there periods where you realize you’ve got three minutes to feed them or they will kill you”. And they both shake their heads yes, that’s low adrenal, irritable when hungry, those feed me now or I will kill you moments. They are not getting enough glucocorticoid, and not enough sugar breakdown. Because there is a direct connection between adrenal hormones and sugar available in the blood for energy.
When that blood sugar drops it’s the same as suffocating as far as your brain is concerned. The problem is if you eat sugar you will feel better for a half hour and it will crash you even worse. You could take a quarter teaspoon, half teaspoon of sugar under the tongue and it will break the attack within a minute, then eat protein. For adrenal it means you have to increase your salt and water intake a lot, people will say I’m already peeing a lot, that’s because the hormone that holds onto water is also low. Adrenal support, salt, water, avoid sugar, you can take liquorish, not the candy but real liquorish, ashwagandha is helpful, vitamin B5. I like a mix called Adrenal Stress End where you take one pill in the morning and it has all these things in it that smooth’s it out. I will use very low doses of the bioidentical cortisol in the morning, I consider it quite safe up to 15-20 mg a day. Our research showed that there was no adrenal suppression using these low doses, but when you go to 25 mg or higher a day you will see adrenal suppression begin.
Briefly on testosterone, 70% of men are in the lowest thirtieth percentile so you want to give the bioidentical. Women, research by professor Hillary White showed that low doses of testosterone helped fibromyalgia pain. But how do you tell if you need estrogen or progesterone, if your fibromyalgia symptoms, not talking about PMS symptoms, that’s low progesterone. If your symptoms of fatigue, insomnia, brain fog, pain, are worse around your menses, that suggests that low estrogen and progesterone is a contributing factor. I would use some bioidentical hormones to see if they are helpful as well. You will find it’s very simple, tired, achy, weight gain, cold intolerant, it’s thyroid. Irritable and hungry it’s adrenal support, it seems worse around your menses, erectile dysfunction, decreased libido, hormone replacement therapy of estrogen, progesterone, testosterone. Or all of the above, it’s not rocket science. For thyroid there are dozens of methods of treatment and you have to see which one for that individual.
I, infections and immunity – The immune system is down in general in this disease, I don’t think there is one infection which is THE cause. There are dozens that have been implicated. I think when the immune system is down your body will pick up a host of hitchhiker infections and no one of them is that big. You will find things like Lyme disease, and other one’s that can be important. But overall the problem I think is more with the immunity than it is with the specific infection, they are just opportunistic. Even small viruses that we keep in check these patients just can’t do that, they are infections that a normal immune system will kick out right away. One of the most important infections to treat, and how do you tell is the testing is not too reliable for infections either. Most of our medical testing is geared to pick up acute full and overwhelming infections. It’s not geared to pick up chronic low grade infections and it won’t tell the difference between an old infection that’s gone and one that’s reactivated.
Because of that, the way that I look at it is candida is the most important infection. If you look at it in terms of size and scale, if a virus is the size of a pinhead and a bacteria might be the size of a living room, the candida bug could be the size of a skyscraper. These are massive organisms to your immune system. They also cause problems in the gut with digestion of partially absorbed food and completely absorbed food. Which then your immune system has to go and digest all that food treating it like outside invaders leading to food allergies. The candida I will treat in virtually everybody, how do you tell if you have it? If you have nasal congestion, post nasal drip, gas, bloating, diarrhea, constipation, all these are signs of candida. When you treat the candida they usually go away.
The sinusitis I will use different nose sprays that have antibacterial, antifungal properties. The combination works very well, most peoples sinusitis will go away with that mix. If the gut symptoms persist and especially if you have a foul odor when you pass gas, that sulfur smell. That’s a sign of bacterial overgrowth often called SIBO, small intestine bacterial overgrowth. If it persists after the antifungal for ten days, if you have allergies to multiple unrelated antibiotics and not everything else, that says it’s not an allergy. In most cases it’s a die-off reaction killing the things that initially flared the symptoms. If you have chronic low grade fever, lung congestion, if you have had a history of your fibro feeling better when you’re on an antibiotic, any of these things I will consider a treatment with antibiotics. If the HHV6 or CMV, are over four or over 1-320, we’ll consider also going with an antiviral for six months.
I have spent the last 35-40 years or so focusing on effective treatment for everybody for this illness. It’s so common that we see patients that their symptoms seem to have started going wrong after a significant viral or flu-like illness. Particularly in chronic fatigue. I don’t use testing as a key way to follow up what’s working. What I do is ask the person, “Do you feel better on this?”. They give it four months and if they’re feeling better, it’s working, if it’s not, it’s not. Instead of recognizing that we don’t have reliable testing yet you need to just treat the person and not just the blood test. It’s a disconnect with the conventional system, they are just not good at all with this chronic stuff.
N, nutritional support. Most people do well with a high protein, low-carb, low sugar diet. Bit eat the diet that leaves you feeling the best. High salt, if you salt restrict with this disease you will crash and burn. I like a good quality sea salt, your body needs it. If your doctor told you restrict it because of hypertension, studies show with high blood pressure if you salt restrict to a level of virtually impossible to maintain, your blood pressure goes down eight tenths of a millimeter. The research shows that the main benefit of restricting salt, from the government guidelines, is that you die younger. And chocolate is a health food in moderation.
In terms of nutritional support which vitamins and minerals they need, all of them. And amino acids, instead of taking 50 pills a day, there is one powdered called the Energy Revitalized System Vitamin Powder. I recommend that for everybody because it simplifies the program. That’s one drink and I add a scoop of ribose to that. A research study shows that ribose increased energy an average of 60% after three weeks of use in fibromyalgia. Ribose gets a bit pricey, $50 a container. We have put it on Amazon, you can get it at endfatigue.com, it’s called SHINE Ribose. It’s $20 for the 280 grams, so it’s about half the cost or 70% lower than others and the form used in the research. I give it five times a day for the first three weeks, and then once or twice a day. People just do the one scoop in the morning alone and add the vitamin powder and add the water in 30 seconds. It’s the best 30 seconds you’ll spend all day for energy, pain, and how you feel overall. Coenzyme Q 10 200 milligrams per day or you use your Bi-Quinol form, Acetyl L-carnitine for three months and I stop it. I think for the first three months it’s important to use it. There are a host of other things that can be helpful but those are the key things.
E, exercise, as able. As you know, if you do too much you’re going to be wiped out. Most people say they do more exercise than they normally do. They send a message that says make more energy in these muscles and they bulk up and they condition. But because of the energy crisis you can only make a certain amount of energy. So instead of conditioning you crash and burn, then you’re afraid to do anything and you decondition. Start with the walking program, as much as you comfortably can, whether it’s 50 steps or 50 minutes. Your body knows, after 10-12 weeks, after the SHINE protocol energy production skyrockets. Then you will find that you can increase your walking by 50 steps every one to three days till two months, get a little $15 pedometer. You’ll find that as long as you feel good-tired after and better the next day, it’s good.
It’s never acceptable to leave somebody in chronic pain. You almost never see anyone you can’t get adequate pain relief for. You doctor’s going to hear about Lyrica, Cymbalta, because they’re spending $210 million a year advertising, which, at least the doctor is hearing about fibromyalgia. What people don’t know is that they’re repurposing and repackaging of drugs for former uses that were approved for other things first. But they’re expensive and not without side effects. I prefer Tramadol, Neurontin, these are two very good medications that work well for people. Low dose Naltrexone, but you want to give it six to twelve weeks, four and a half milligrams is the maximum dose. And then there’s Lyrica, Cymbalta, Savella, Zanaflex can be very helpful for pain. They are having new research with Namenda, which I think doesn’t work worth a damn in my humble opinion, for Alzheimer’s which is what it’s marketed for. But can help if you have the allodynia where normal touch hurts kind of a thing. Or if you have severe pain not hit by other things.
There is so many things that you can do, and for those that need narcotics, which most people don’t. But realize that if you do, it’s going to make you B-vitamin deficient and it’s going to cause testosterone deficiency. So both of those need to be addressed because otherwise, both of those is going to aggravate the pain. Natural pain relief, Curamin is a mix that’s outstanding. I’d give it six weeks to work, you can take all of these together if you need to. N-pain can be very helpful and then Topical Comfort, if you have localized series of severe pain. So you have a wrist to elbow pain or low back pain. The compounding pharmacies can make a compounding cream that has five, six, seven of these medications in it. After two weeks of rubbing it in three times a day, you get the same tissue levels if you’re taking all seven medications by mouth. But the drug level is zero so there is no side effects. You give your body SHINE and the pain went down an average of fifty percent in our study. And this was your randomized, double blind, placebo controlled study where everything but the exercise was blinded, the pain went down. Most people no longer qualifies as having fibromyalgia by the end of the study at 99 days.
So these are very, very treatable, at the website endfatigue.com you can see the studies that were published. And the energy analyses program is a simple quiz that will tailor the treatment protocol to your individual case. To help you optimize your energy and to tell your physician what they need to do because it’s just all going to be laid out for them. Here are the things in your case that are most likely to help. I just see people in consultation from all over the world, including by doing phone consultations.
Chronic pain is more toxic than narcotics because it triggers changes in the microglia, or what everybody called brain pain sensitization. You’ll see the same thing with reflex sympathetic dystrophy. There is new information that there is micro inflammation in the brain, in the microglia of the brain. The low-dose Naltrexone can be very helpful as can a number of other treatments. The theory is that it decreases the microglial proliferation that occurs, that causes the chronic inflammation. The bottom line with the low-dose Naltrexone is we don’t know, except we know it works. Vitamin D is a pain modulator as well, it turns out it has similar pleomorphic effects and it might be acting on that axis as well.
There is a free app called cures A-Z, we have everything from apnea to zoster and how to get well from it on my endfatigue.com page.
The information contained on this site is for educational purposes only and should not be used as a substitute for diagnosis or treatment from a licensed physician. It is essential that you discuss with your doctor any symptoms or medical problems that you may be experiencing.
M. Scherker medical researcher