Fibromyalgia and Lyme Disease

The Fibro-Fix Summit

These are my notes from this summit, for additional information please visit the speakers web page.

Dr. Mark Hyman
Director for the Cleveland Clinic Center for Functional Medicine
Founding Director for the Ultra Wellness Center in Lenox Massachusetts
Chairman of the Board for the Institute for Functional Medicine
web page drhyman.com

Functional Medicine Matrix Applied to Fibromyalgia

I was a normal family doctor and then I got chronic fatigue and fibromyalgia and that’s how I figured out functional medicine, was on myself. I was seeing doctor after doctor, Columbia, Harvard, the best physicians ever, given all sorts of drugs. Anti anxiety drugs, anti depressant, crazy stuff, my gut was a mess, my muscles were hurting, my muscle enzymes were high. Everything went wrong and there was no diagnosis, so it was sort of chronic fatigue and fibromyalgia. I went from being fine riding my bike a hundred miles a day to not being able to walk up the stairs. From being able to see thirty patients to not being able to remember a chart at the end of the day without takings notes, not even remembering where I was at the end of a sentence from where I started. Based on this issue that I had myself I was forced to figure things out.

I realized that chronic fatigue and fibromyalgia it’s not one thing, it’s a syndrome. So it’s caused by many things and in each person you have to figure out what the thing or things are and conventional medicine doesn’t have any approach for that. It’s like you have this diagnosis, there’s no treatment. Take this anti-inflammatory or take Cymbalta, which is an antidepressant, it helps with pain. Sometimes these medications can help mitigate symptoms, or Neurontin, or whatever it is. And I think it misses the point, which is what’s the cause.

Functional medicine is more about focusing on the root cause. For me the root causes were heavy metal poisoning from living in China with mercury. And I think I got a gut infection, and my gut microbiome got completely out of whack, partly because of the mercury that made it predisposed to that. It took a long time for me to figure it out. I had elevated muscle enzymes, autoimmune antibodies, I had all these liver function tests, my white count was low. I developed rashes, I had rashes on my eyes, food sensitivities. None of it fit a conventional diagnosis, but it was real. It really helped me focus on understanding functional medicine because in chronic fatigue, fibromyalgia, everything goes wrong. And it’s really a disease, like a syndrome, that can have many, many causes. That’s really the key here, finding out what your fibromyalgia or chronic fatigue is caused by.

Dr. Brady – When you look at the rheumatology literature, when they really try to pick apart the path of physiology of “classic fibromyalgia,” it is really this sort of upregulated perception to sensory information. And there’s limbic system dysfunction and problems in the central nervous system and central sensitivity and hypervigilance and all these other things.
Dr. Hyman – Those are secondary.
Dr. Brady – I see a lot of patients that say they had fibromyalgia. But when I dig through them, they either have an underappreciated thyroid issue, or they have a heavy metal toxicity, or they have a mitochondrial production problem, or they have a host of other things. They have dysbiosis. Do you think there is this sort of classic fibromyalgia that is more this central pain processing disorder, usually in women after trauma, a lot of anxiety, sort of an aberrant stress physiology driven phenomenon? And then there’s all this other metabolic stuff that can produce fatigue, pain, and IBS, that gets called fibromyalgia?
Dr. Hyman – I don’t know, I honestly don’t think it’s like a black and white thing. I think there’s no such thing as pure fibromyalgia, I think it’s a continuum of dysfunction. And there are psychological overlays, there’s trauma that makes people more susceptible. There are things that affect their immune system, their gut. There are things that affect their ability to manage their hormonal regulation, and all that is wired into your biology.

Yes it could be physiological factors. But it’s really often contributed to a lot of other factors, that once you identify and treat those, the other things get better. So you can combine it with other techniques, whether it’s therapy or EFT or various kinds of body therapies, like yoga, meditation. All that can help. But you have to deal with the fundamental physiology that’s gone wrong, which is inflammation, mitochondrial dysfunction, oxidative stress, toxicity and hormonal dysregulation. It’s all on an individualized basis with each patient. In functional medicine we have developed a model for taking a person’s history, called the matrix. The matrix is a map to map your story, your genetics, your past history, your symptoms, your lab tests, your lifestyle factors. You put all of this on the map and see where the issues are for each person.

For some people it might be because they went to Africa and got some gut infection, then everything spiraled out. Another because they got mercury poisoning from fillings in their teeth, maybe a tick infection, Lyme Disease, mold exposure, and chronic inflammation from that. So everything needs to be mapped out through a good medical history using the functional medicine lens. We look at the gut function through a stool test, mitochondrial function though our organic acid testing. We look at oxidative stress, heavy metals and heavy metal burden, your underlying nutritional status, which plays a role.

A lot of women, for example, in Northern Europe who are Muslim and wear burqas in the north, they all have severe vitamin D deficiency and all have symptoms of fibromyalgia. But it’s actually the vitamin D deficiency that’s driving it. Other people have bacterial overgrowth that is caused by various insults to their gut. And that bacterial overgrowth will often be a huge factor in fibromyalgia. And you give them antibiotics for the bacterial overgrowth, and antifungals, and they get better. If they have mold exposure it’s really a huge issue.

More women seem to be diagnosed with fibromyalgia than men, I don’t know if it’s changes in hormones, or they’re more susceptible to trauma. It may be other factors, but I do see it in men, it’s just more predominant in women.

I wrote an article a number of years ago called “The Right Order of Things”, which is how to do the right thing in the right order. If you do the right thing in the wrong order you can make someone worse, and there are basic principles of where to start. I think in functional medicine we’ve learned that the gut is really a huge place, and the diet is a huge place to start, particularly chronic fatigue fibromyalgia. What I’ll do is get people on an elimination diet, getting off gluten, dairy, low glycemic, low fermentation diet. And depending on what their symptoms are, if they have bloating, if they have evidence of yeast issues, I’ll often give them an antibiotic to clear out the bacterial overgrowth, an antifungal. Then I’ll do the functional medicine five R program, which is to remove the offending agents, whether it’s food or bugs. To replace the missing things like enzymes, prebiotics, re-inoculate, which is the third thing, re-inoculate with healthy bacteria.

Then repair, which is actually to help repair the lining with glutamine and quercetin, meriva, I mean curcumin, fish oil, zinc, vitamin A. And then I’ll often use other techniques to help restore the enteric nervous system, whether meditation, yoga, or feedback, whatever works for that patient. It’s really a comprehensive approach, I start there and see how much people get better. If I’m really suspicious about something else I might dig in there, but I might usually start building their diet and nutrition and their basic supplements first. Often they need magnesium, they’re magnesium deficient. Often they need mitochondrial support, whether it’s a mitochondrial combination product or it could be lipoic acid and acetylcysteine, carnitine, ribose, magnesium aspartate, magnesium potassium aspartate, CoQ10. Phospholipids can be very helpful, it really depends what’s going on. After I do that first flush of reset, we’ll see where people are and if they need further treatment. Whether it’s treatment for chronic infections, heavy metals, Lyme, or mold, then we kind of get into the next layers.

The matrix in functional medicine is so great because it gives you a framework to start digging in, like what did I miss, what else could it be? I had a woman the other day who was sick for years, she had gut issues, she was toxic all the time, chronic pain, fatigue. I treated that and she felt so much better, then I found out she had Babesia duncani, which is rare. Well not so rare anymore, but it was something I never really learned about. She had a very significant antibody profile so I treated her for that and it was like a miracle. Everything got better within a few weeks, she had been seeing a lot of doctors but nobody went down the rabbit hole to find out what was the cause. Fibromyalgia is a wastebasket diagnosis, same as irritable bowel syndrome, it’s just a label that we give to people who share a group of symptoms. And they’re all heterogeneous, they often don’t match up. I think it’s really a mistake to call them all the same disease because it’s not all one disease.

Dr. Brady – With Lyme we know that the standard ELISA test is almost useless, even the western blot bands and all that by the CDC criteria leave a lot to be desired. And a lot of people are doing PCR molecular analyses, some are doing cytokine analyses with the iSpots and things like that. What’s your go to to try to uncover if someone really has one of those tick borne illnesses?
Dr. Hyman – I think we’re going to get smarter about it. I know a guy whose working with a biotech company looking at the fingerprints of Lyme. What are the chemical, biochemical signatures and the metabolome that we’re not even looking at and then how do we begin to identify those. There are certain things I look at, I call them fingerprints of Lyme. Do they have a low CD57, do they have a high 125 to 25 vitamin D that’s unmedicated? Do they have a high TGF beta 1 or C4A or C3A, are there other indicators, what does their conventional test look like? Then I might do other tests, like Lyme cultures. Or I might do IGeneX testing and look at both western blots and PCR testing, plus looking at their symptoms. And I look for coinfections because they often have coinfections.

I had a woman come in the other day, she had these chronic neurologic problems and fatigue. She had seen the MS doctor and this doctor and that doctor at Cleveland, it turned out she had ehrlichiosis and I treated her with Doxy medicine, she got better. I’m not a big fan of drugs but sometimes you just find this stuff you’ve got to treat.

I had Lyme disease as part of the tail end of this syndrome. I had mold exposure, mercury, gut issues, food sensitivities, leaky gut, you name it I had it. I just learned functional medicine from the inside out, unfortunately. I realized there are a lot of people that have Lyme that don’t get better, I got better. Why did I get better? I think the one’s that get better, often there may be genetics involved, but also there may be the rest of your constitution. So if you eat great and you sleep great, and you take care of your personal health. You exercise, detox, and get rid of heavy metals, clean up your gut. You do all the right things and take these important nutrients, then you’re much stronger and your body can fight it.

So it’s how do you actually then get to the root of the constitution? I always joke and say being a functional medicine doctor’s like being a soil farmer, an organic soil farmer, but not a conventional agriculturist that puts chemicals on the plant to keep it healthy. We actually deal with the health of the soil, then the disease can’t show up. That’s the whole concept here, is how do you create healthy soil? What nutrients does it need? What matter does it need? How do you actually create a healthy constitution or the biological terrain that we all learned about? We have to rebuild that from the ground up, from the foundational level, to build that resiliency back in and that redundancy into that person’s vibrance because they’re long time chronic illness people. They’re not in great shape when they come to see us most of the time because they don’t come to doc’s like you and I first. They usually come last after they have gone through a lot of other doctors.

I think in chronic disease one of the biggest drivers is sugar and refined carbs. They are a huge poison for the mitochondria, they create a huge stress in the mitochondria and create oxidative stress, inflammation. So really a diet that’s high in starch, sugar, refined carbs is toxic to the mitochondria, which at the end of the day are the things that are causing the pain and suffering. And so you have to unload the mitochondria. Second is mitochondria run better on fat not sugar, particularly good fats. MCT oil is sort of like a super fuel, which is medium chain triglycerides. So omega 3 fats, your mitochondrial membranes are made up of omega 3 fats. You need all the right kinds of fats to help fuel your mitochondria. Coconut water, coconut oil, those are great mitochondrial fuels and really quite powerful. When you reduce or restrict dramatically the sugar and carbs, you dramatically increase the fat, a lot of these patients a lot of their symptoms will get better.

Diet really depends on the person, I think it’s often experimental. You try X and see how it works, then you try Y and see how it works, I’ve seen people do great on ketogenic diets that really struggle. And in short term it can be a really powerful reset for the brain, it helps cognitive and mitochondrial function. It helps autophagy and cleaning up the mitochondria, so I think there are a lot of benefits to it. It really just depends on the individual and what’s going on with them and which thing I would try first. You can get some benefit from higher fat without being ketogenic, you can use MCT oil to kind of get keytones. That’s pretty much how I eat and I find that I feel better, my muscles feel better, my energy feels better. I still have a weak area, where if I don’t do everything that takes care of myself I can slip into this old feeling. It’s not as extreme as it was but I know when it’s happening. I almost can feel my mitochondria changing, I can feel my brain starting to change. And it requires me to quickly reset and have different inputs.

Dr. Brady – I actually had a similar history. I had significant mercury toxicity, which kind of sent me down that same path you did. I had to figure it out out of desperation as well, and figure out this model. A lot of us in functional medicine sort of have that story don’t we?
Dr. Hyman – Yes we do, family or….yeah.
Dr. Brady – It’s kind of sad that it takes that motivation sometimes to move healthcare practitioners into this paradigm of healthcare. You had mentioned phospholipid therapy before, what do you think about using phospholipid supplementation to help with mitochondrial membrane fluidity and brain function?
Dr. Hyman – I think it helps a lot. Your brain cells and all your cells are made up of phospholipids in part. There is a theory, true or not, I don’t really know. That often when there’s toxicity the mitochondria and the membranes of your cells are affected because you can’t produce the right types of phospholipids for your cells. And then you end up creating these funny looking fats that are toxic.

And the peroxisomes can’t produce, they’re poisoned. And they can’t produce the right fats because the peroxisomes assemble fatty acids in your cells. Then you end up with this sort of toxic picture. Using oral or intravenous phospholipids therapy, which came from Europe, can be very effective. I find it most effective in mold patients, in Lyme, chronic fatigue patients. I used it myself, I found it quite powerful. I think even though itself it’s not a cure or treatment, I think it’s a mechanism for helping rebuild the broken system that exists when there’s fibromyalgia.

With fibromyalgia don’t give up, I never gave up. I mean I know it took me ten years to figure it out, and I didn’t really have a lot of help for myself to get really fully better. I would say to people if you have this condition it just requires detective work. It requires persistence, it requires you to find somebody to work with and really work through the list.

I know Dr. Brady you’re writing a book called The Fibro-Fix. I’m sure you go through it in that book.

What are the things you need to think about? What about your thyroid? What about your gut? What about your adrenals? What about toxins, heavy metals? It could be glyphosate, who knows? There are other toxins. You need to have a massive detoxification process, you need mitochondrial support. There are other kinds of therapies that can be helpful. Also I think there are sauna therapies and different kinds of things that can be very powerful. You have to be a detective, is it mold, is it Lyme, is it a Lyme related illness? Is it some other latent infections, what’s going on? I think it’s often not one, it’s many, many things at the same time. You have to often treat all of them, and that can be daunting for practitioners.

I think you and I are very experienced, we’ve been doing this for decades. And then there are other practitioners who are just learning. It’s not easy to sort through the mountains of data from someone’s history, from their lab tests, from their stories and put it together in a plan. But I think it’s possible and I’m hopeful your book is really providing a framework for people.

I wrote a book, The Ultra Mind Solution, a bunch of years ago which is really about the brain. But it can be very effective for dealing with these kinds of issues. And it’s not directed at that particularly, it’s really focused on pain and inflammation and the diet. It’s a very anti-inflammatory diet, which is very low glycemic, higher in good fats and low allergy. And I think there’s just a lot of to do that actually could make a big difference.

You can take a boatload of supplements but if you have mercury poisoning or Lyme Disease it’s not going to help. It might be the right supplement but in the wrong order. It might help clean up and repair the system afterwards but it doesn’t deal with the thing up front. Or it’s dose dependent, the wrong combinations.

The future of healthcare is going to require a different kind of thinking and require a different approach just looking at systems biology and systems medicine. Functional medicine deals with chronic disease a different way. At the Cleveland Clinic they’re funding a huge program. We’re doing a big clinical program where we’re now 1,500 people on our waiting list. We have a new space we’re building, it’s 18,000 square feet. And then we are expanding to a another location with another probably 10,000 or 12,000 feet. We are doing research projects in dementia, autoimmune disease, diabetes, asthma, migraines. Looking at cost of care, looking at outcomes in value based care, doing community work. We’re doing a lot of things to really help show this model works.

You can learn about Eat Fat, Get Thin at eatfatgetthin.com I have all programs and courses for people to be able to do more with it. We have a challenge, where we have 1,000 people in there doing an Eat Fat Get Thin challenge, which is great. This is a supportive experience rather than just doing it on your own, it’s often easier than doing it when you have support.
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Disclaimer:
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

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